Thread View: alt.support.jaw-disorders
1 messages
1 total messages
Started by Bruce Chang
Tue, 18 Aug 1998 00:00
What happened in AOL's PRC TMJ/TMD folder (very long)
Author: Bruce Chang
Date: Tue, 18 Aug 1998 00:00
Date: Tue, 18 Aug 1998 00:00
5295 lines
217705 bytes
217705 bytes
Below you will see what has transpired over the past week in America
Onlines Pain Relief Center TMJ/TMD folder, which appears to actually
be owned by some company called J2S2 Productions.
Now why would a private company own a message forum inside of AOL?
What possible profit can they be making off of people who are
supposedly suffering from all sorts of conditions besides those that
affect the TMJ?
What is it that is really going on inside that place?
I have intentionally CC:'d this message to all the contributors below
and they are personally invited out here where I intend to slice and
dice everything they have written.
I intend to expose AOL & J2S2 Productions for their censorship of
Webby & Chang. For stealing our written words, for taking down our
website with no prior warning or notification and for not giving us
back our copyrighted material held within their web server.
We have not discluded legal action against them. This should be of
great concern to all of us who are trying so hard out here to
understand the TMJ crisis at hand.
I think that maybe, one or two people in the list below might have
something actually wrong with their TMJ, but what about the rest? And
where does J2S2 make their profit off of all of this? AOL has
unlimited access for $20.00 or so a month, so where is the profit that
an outside company would need to own and manage and maintain a data
base of people writing about all their supposed suffering. Something
doesn't add up in all of this and I am telling all of you right now
that Chang won't stop until he gets to the bottom of this.
How come this J2S2 Productions has the authority to shut down peoples
accounts? Are they really just AOL? Or is AOL really them?
To You PRC phonies:
Come on out the water is nice and warm right now.
Chang
P.S. Are you going to get me shutdown out here too, again?
P.P.S. This is a special vanity press just for MeghanNYC@aol.com
since she's so hip to pressing.
-----------------------------------------------------------------------
Subject: Jaw popping
Date: 8/11/98 7:35 AM Pacific Daylight Time
From: McMori
Message-id: <1998081114351500.KAA14950@ladder03.news.aol.com>
Does TMJ have anything to do with jaw popping? Just recently the
right side of my jaw has been popping. Just today I've noticed a dull
ache there. Also, I noticed I had very sore neck muscles and my
jawline is breaking out in very painful pimples. Any suggestions?
Thanks!
--------------------
Subject: Re: Jaw popping
Date: 8/11/98 2:13 PM Pacific Daylight Time
From: JulieKB
Message-id: <1998081121130200.RAA03037@ladder03.news.aol.com>
McMori,
I believe that "jaw popping" can be an indication that the disc
between the condyle of the lower jaw & the upper jawbone is not
functioning properly--that is, perhaps the disc is not "traveling"
properly with the condyle whenever you move your jaw, open your mouth,
etc. and that the "pop" could mean that the ligament attached to the
disc gets stretched and then suddenly the disc is pulled back by the
ligament (sorta like a rubber-band).
Perhaps you should make an appointment with a TMJ specialist (not an
oral surgeon) in your area.
Julie
---------------
Subject: Re: Jaw popping
Date: 8/11/98 3:07 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081122071000.SAA01446@ladder01.news.aol.com>
Perhaps you should make an appointment with a TMJ specialist (not an
oral surgeon) in your area.
Julie
__________
Why is it so difficult for people to remember that in the USA there
isn't any specialist called a TMJ specialist????
Webby
-----------------
Subject: Re: Jaw popping
Date: 8/11/98 5:55 PM Pacific Daylight Time
From: Scuba Soul
Message-id: <1998081200555100.UAA24655@ladder01.news.aol.com>
Hi McMori,
just read your story. It sounded pretty much like the beginning of my
'TMJ-expierience'.
I don't mean to scare you, but I honestly think you should consider
seeing a TMJ-specialist for that. In the meantime try applying moist
heat or ice on the area that hurts, as it might help to ease your
discomfort. Put it on for 20 Minutes, rest for 20 Minutes and apply it
for another 20 Minutes. I hope it helps.
Take care,
Elke
---------------
Subject: Re: Jaw popping
Date: 8/11/98 6:55 PM Pacific Daylight Time
From: JV8675309
Message-id: <1998081201555600.VAA04087@ladder01.news.aol.com>
Actually there is a doctor in my area that has a roadside sign that
specifically states "specialist in TMJ/myofacial disorders."
Jennifer
--------------------
Subject: Re: Jaw popping
Date: 8/11/98 7:08 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081202085300.WAA14945@ladder03.news.aol.com>
Subject: Re: Jaw popping
Date: Tue, Aug 11, 1998 21:55 EDT
From: JV8675309
Message-id: <1998081201555600.VAA04087@ladder01.news.aol.com>
Actually there is a doctor in my area that has a roadside sign that
specifically states "specialist in TMJ/myofacial disorders."
Jennifer
______________________________________
A roadsign???????????????? What might this mean??????????
Webby
---------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/11/98 7:16 PM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081202161500.WAA07227@ladder01.news.aol.com>
Hi Webby!
How ya been? Long time no see.
Now Webby, you know as well as I do that what JulieKB means by
"specialist" is someone who works on more TMD patients (for whatever
the reason may be) than the average dentist does. Thereby, hopefully,
having a better working knowledge of the ensuing problems. Accent on
hopefully! Do we need "specialists"? YES! Why don't we have any? I
don't know. Perhaps you might enlighten us. :-) People might like
to hear.....
Regards,
Snow
---------------
Subject: Re: No TMJ specialists in the USA
Date: 8/11/98 9:02 PM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081204020300.AAA24417@ladder01.news.aol.com>
Webby...
Our own PRCSDrWes from the TMJ chats is a TMJ specialist of quite
some renown...Might want to check out some of his chats and/or his
book.
Be Well...
Patty
--------------------
Subject: Re: Jaw popping
Date: 8/11/98 9:04 PM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081204040800.AAA03698@ladder03.news.aol.com>
Oops Webby,
Didn't see this post til I had posted my other. Wes has recommended
friends of mine to other TMJ specialists in other parts of the
country. These are docs, I suppose, who work on nothing else but TMJ.
Glad to see you've already met him :)
Be Well...
Patty
------------------
Subject: Klonopin
Date: 8/11/98 10:18 PM Pacific Daylight Time
From: SweetieLF
Message-id: <1998081205181100.BAA13744@ladder03.news.aol.com>
Hello everyone...
Has anyone ever tried Klonopin, to help with depression, anxiety,
and muscle spasms and headaches and jaw tightness/clenching due to the
TMJ over muscle relaxants or antidepressants such as Elavil? My
psycholgist recommends this, and my TMJ orthodontist is going along
with him. I am not sure, they are also saying my muscle spasm and pain
will not end till braces come off in Decemeber. I am afraid of riding
medication rollar coaster to find right
med and suffeing till then, but this drug is like Valium and Xanax and
it caused drowsiness two things I cnat have when driving to school in
fall and in classes and studying but is it worth it to save my heath
and my mind and emotional well being?? I am confused, and a little
scared. I am saying I need some kind of relief to live life, go to
college, and basically not die, till December...what do you all think,
your advice is highly respected and
appreciated....thank you all......
Laura
---------------
Subject: Re: Jaw popping
Date: 8/11/98 10:48 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081205482000.BAA07695@ladder01.news.aol.com>
Now I'm writing oops. I didn't see this before writing the post just
prior to this one.
Webby
----------------
Subject: Re: No TMJ specialists in the USA
Date: 8/11/98 11:21 PM Pacific Daylight Time
From: JulieKB
Message-id: <1998081206211600.CAA10534@ladder01.news.aol.com>
Webby,
In regard to your criticism that I am misleading others into believing
that there might be such a thing as a TMJ specialist--contrary to your
statement "this isn't really a matter of semantics...although it may
seem to be nothing more than that," it IS simply a matter of semantics
which means "pertaining to or arising from different meanings of
words." And, you, quite frankly, are not only assigning the word
"specialist" more distinction
that it actually has, but also believe that others must, miraculously
and consistently, conform to your personal interpretation of this
word.
My Random House dictionary defines specialist as "1) a person who
devotes himself or herself to one subject or to one particular branch
of a subject or pursuit; 2) a medical practitioner who devotes
attention to a particular class of diseases, patients, etc."
Now, had I suggested to anyone that they make an appointment with a
Board Certified TMJ Specialist, your criticism would have been valid
as there is no such thing.
The only thing I can see that I did wrong in my post to McMori is that
I failed to stress (as I generally do) that he/she should find the
best, most knowledgeable TMJ specialist in the area. Unfortunately,
we can only rely on "word of mouth" rather than the designation of
Board Certification to meet that goal.
There are many institutions across the country who offer specific and
comprehensive training in the disorders related to the TMJ. But, it
still comes down to attempting to find a dentist or doctor who has not
only had extensive schooling in this area, but who has successfully
treated a large number of TMD patients. Until such a thing as Board
Certification in TMJ/TMD becomes a reality, we have very few options
but to do our very best to be
well-informed and to be as certain as possible that our doctors are
also. Even if Board Certification did exist for TMJ/TMD, it would
still be our responsibility as patients to find the doctor with the
highest rate of success as it is within any other medical field which
has or requires Board Certification.
Julie
-----------------
Subject: Re: Jaw popping
Date: 8/11/98 11:41 PM Pacific Daylight Time
From: JulieKB
Message-id: <1998081206414800.CAA12016@ladder01.news.aol.com>
Webby,
Regarding Jennifer's statement that there is a doctor in her area who
has a roadside sign that specifically states "specialist in
TMJ/Myofacial disorders"--I could very well be wrong, but I simply
took that to mean that it was a business sign which sits apart from
the office building. One of my doctors has a sign like that placed
closer to the street than the building for purposes of identifying the
location of her clinic for the simple purpose of
helping people find it. I can't come up with a term that would
appropriately entitle that sign--it isn't a business directory as is
common for strip malls because it is for a single business; it isn't a
marqee; would it be a streetside sign? I think I have referred to it,
at times, as a "roadside sign" while directing other people to that
office.
Whatever type of sign Jennifer was referring to, I felt she was simply
stating that she had seen sign listing "specialist in TMJ" below a
doctor's name.
Julie
-----------------------
Subject: Dental Work
Date: 8/12/98 12:20 AM Pacific Daylight Time
From: Page1e
Message-id: <1998081207202800.DAA23487@ladder03.news.aol.com>
How does one go about getting the jaw x-ray paid for by insurance?
I've yet to have anyone see me because it isn't covered under medical
and not recognized
and a dental issue.
Secondly, I've had RSD since Jan 92, now faced with possible root
canals a/o extractions. Can anyone share any experiences/advice they
may have had getting dental work done ?
Thanks
Liz in Va.
--------------------
Subject: Re: Klonopin
Date: 8/12/98 1:53 AM Pacific Daylight Time
From: JulieKB
Message-id: <1998081208532600.EAA17962@ladder01.news.aol.com>
Laura,
Sorry that I can't give you "personal" information on Klonopin as I
was unfamiliar with it, but I looked it up in my "Patient Drug Facts"
book.
According to the book, Klonopin (clonazepam) is an antianxiety agent
(benzodiazepine, same family as valium, xanax, librium) used to
relieve nervousness and tension. Sometimes called a "minor
tranquilizer."
Benzodiazepines affect the brain to calm nervous tension while causing
little drowsiness, according to the book. So, if you get drowsy when
you first start taking it, that will probably subside in time.
Be sure to read any precautions which come with the prescription. The
main thing I found in the book is that it can cause liver disease &
should not be used if a person has lung disease.
According to the book, this drug is intended for short-term relief of
the symptoms of anxiety (so, therefore, should not cause liver
problems if used for a short period of time). For long-term use,
liver function tests should be done.
If you are still taking St. John's Wort, be sure to ask your doctor or
pharmacist if there are any drug interaction possibilities. The book
lists Prozac as one which interacts with this & St. John's is very
similar to Prozac.
Julie
---------------------------
Subject: Re: Jaw popping
Date: 8/12/98 4:41 AM Pacific Daylight Time
From: JV8675309
Message-id: <1998081211415700.HAA02692@ladder03.news.aol.com>
?? Not sure I understand your question. . .I wrote a roadside sign,
not a roadsign.
Jennifer
---------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/12/98 7:24 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081214244600.KAA05032@ladder01.news.aol.com>
From: JulieKB
Message-id: <1998081206211600.CAA10534@ladder01.news.aol.com>
Webby,
In regard to your criticism that I am misleading others into believing
that there might be such a thing as a TMJ specialist--contrary to your
statement "this isn't really a matter of semantics...although it may
seem to be nothing more than that," it IS simply a matter of semantics
which means "pertaining to or arising from different meanings of
words." And, you, quite frankly, are not only assigning the word
"specialist" more distinction
that it actually has, but also believe that others must, miraculously
and consistently, conform to your personal interpretation of this
word. [clipped the rest]
___________
Julie,
The post I wrote to you wasn't about YOU misleading anyone. It was
about the use of the word "specialist" which is misleading to
everyone. It has misled you as far as I'm concerned. But since you
don't have any concerns about it all... maybe you won't be interested
in anything more I might write here on the subject.
Let's think about maxillofacial surgeons for a moment. If you need
some kind of TMJ surgery or another specific procedure done by the
maxillofacial surgeons... will you be content to go to a person who is
not board certified in maxillofacial surgery? If you need
neurosurgery, would you go to a person who is not board certified? I
don't know what your answer is.
When and if the day comes when dentistry or medicine does offer such a
specialty, what do you think all those non-Board Certified
"specialists" will do in order to compete for the patient-dollars?
This isn't a simple matter and I think you are trying to convince me
and the others who might read this that I am somehow making more of
this matter than is necessary.
I think you haven't really understood me but that might be because the
issue requires a lot of discussion in order for the subject matter to
be truly clear. Obviously, we've only skimmed the top of a few
limited picture....
Webby
I've read your comments and I understand that you've expressed your
opinion as to what this all means.
-----------------
Subject: Re: Jaw popping
Date: 8/12/98 7:34 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081214342100.KAA15152@ladder03.news.aol.com>
Subject: Re: Jaw popping
Date: Wed, Aug 12, 1998 07:41 EDT
From: JV8675309
Message-id: <1998081211415700.HAA02692@ladder03.news.aol.com>
?? Not sure I understand your question. . .I wrote a roadside sign,
not a roadsign.
_______________
I don't know where that post is right now (with the question). Maybe
you can clip things like that into your reply post for easy reference
in the future. I try to do it but sometimes I forget.
Anyway, it doesn't matter too much. I was thinking roadsign as a sign
on a road... and I guess that might be what a roadside sign
is..........but what do I know? I think the advertising is out of
hand.
Webby
----------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/12/98 7:37 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081214371400.KAA06153@ladder01.news.aol.com>
man...I thought all this bs was over with...it was a pleasure to read
this boards WITHOUT it during the last couple of weeks. Sorry to see
it's back to the same old thing. bye bye I'll try again next year.
------------------
Subject: Re: Experience Required
Date: 8/12/98 7:58 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081214581400.KAA17372@ladder03.news.aol.com>
Subject: Experience Required
Date: Wed, Jul 15, 1998 00:19 EDT
From: KGoldenk
Message-id: <1998071504192800.AAA09678@ladder03.news.aol.com>
If anyone out there has had the mouth stretching other me, I need your
experience spelled out for me. Was your pain from the procedure
immediate or did the on set of pain begin days or even weeks after
the procedure? This an important question to me. It has now been 15
days since I had that done to me. On day 10 last Friday thru today, my
pain has been at a 9.8 consistently even attempting to go to sleep. It
is bilateral but is worst on the
right side. The pain runs from my joint itself diaginally down to the
corner of my chin, the same way my rib graft runs. Or could this pain
be a result of my rib graft now 6 years old, failing? I see my doc
tomorrow cause it is BAD. PLEASE ANYONE WITH ANSWERS RESPOND!
Kathy G.
__________________-
I was trying to read the last couple weeks of posts (all that are in
the current file) and this one caught my eye.
Kathy G. has asked for someone's assistance with firsthand experience.
I do have some experience in this regard but I'm not sure if a
response is still needed by Kathy G. If you do, Kathy G., please
post something that explains what you had done (name of procedure,
date, where it was done... whether it was in/out patient... and why it
was done.)
I don't know if I have anything helpful to share with you or not until
I know more about your need.
Webby
---------------------------
Subject: How much does an EZ Flex cost?
Date: 8/12/98 8:18 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081215181700.LAA10183@ladder01.news.aol.com>
Does anyone have this information?
Webby
---------------------------
Subject: Re: Dental Work
Date: 8/12/98 9:15 AM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081216150700.MAA16186@ladder01.news.aol.com>
Dear Page:
I am 6 mos. new to having TMJ, and mine was caused by a car
accident, the was the "other guy's" fault. I have written to his
Insurance Co. that their first attempt $500 check will not cover my
problem, which has now escalated to a possible $40,000, including the
x-rays, Dentist, possible Surgeon and so on, and so on.
I have learned these things. In WHATEVER write-up a doctor,
hospital, x-ray lab, or service does for you, tell them ABSLUTELY DO
NOT insert the words "TMJ" anywhere. I made up my own version of a
description and had them use "jaw dislocation" instead. I understand
from everyone on the net that once the term TMJ is used, every
insurance carrier "upchucks" and will not pay anything related to the
problem - probably, I surmise, because TMJ is
relatively incurable, goes on a very long time, and only the symptoms
are treatable.
If you can, try to hook your TMJ (or jaw dislocation) to an
accident, if that's what happened, or other accidental incident. Then
your medical insurance or the "causer of the accident" 's car
insurance or medical insurance should agree to cover.
A Companion in TMJ
GILLYANNEB@aol.com
------------------------
Subject: Insurance, the TMJ and TMD
Date: 8/12/98 9:18 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081216182900.MAA16536@ladder01.news.aol.com>
If any of you are interested, you might want to come over to Usenet's
newsgroup, alt.support.jaw-disorders where a discussion is beginning
to take shape concerning the issues of various types of insurances and
how the problems of TMD or problems directly involving the TMJ are
viewed (covered, not covered, etc.) by the various companies and types
of insurances inside the USA. This is a complex matter to discuss
because states have unique
laws concerning insurances and there are many different types of plans
(private-individual, group-corporation benefits, public-major risk
plans, HMOs, PPOs, self-insured corporate plans, etc.)
I've always wondered how so many people in the PRC manage to pay for
all the care they write about receiving. I know that not everyone
carries health insurance. Some can't afford it, others are
uninsurable and then plans have limitations too.
I note often how some writers never seem to get away from their
various health care providers (doctors, dentists, physical therapists,
chiropractors, etc.) and I wonder how they manage to afford all the
care they write about. OBviously, the whole idea of treatment for a
condition is to return the patient to a more happy and productive
life. I'm not sure how all of you feel about the quality of your
lives as a result of the care you are receiving.
It seems the best thing for everyone affected by TMD or joint disease
would be to get well enough to get away from being "professional
patients."
Of course we could attempt to discuss this here, but the PRC is very
limited technically and Usenet was designed for the specific purpose
of discussion development.
So, I am extending an open invitation to all of you (lay and
professional) to come and share your experiences, questions, and
concerns.
Webby
---------------------------
Subject: Re: Dental Work
Date: 8/12/98 9:31 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081216311100.MAA27230@ladder03.news.aol.com>
If you can, try to hook your TMJ (or jaw dislocation) to an
accident, if that's what happened, or other accidental incident. Then
your medical insurance or the "causer of the accident" 's car
insurance or medical insurance should agree to cover.
_____________
Oh my......... I don't know that linking "TMJ" to a car accident is as
wise a way to get treatment as you may think. It's a great big
enormous can of worms is what I think!
If you want to be treated correctly for any illness, treatment begins
with a proper diagnosis... not with a treatment that is conveniently
insurance-covered.
Be very, very careful what you buy into, GillyAnneB
Webby
---------------------
Subject: Re: Dental Work
Date: 8/12/98 9:47 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081216470500.MAA28994@ladder03.news.aol.com>
Secondly, I've had RSD since Jan 92, now faced with possible root
canals a/o extractions. Can anyone share any experiences/advice they
may have had getting dental work done ?
Thanks
Liz in Va.
__________
What is the problem with getting your dental work done? I don't
understand. Is it because you can't get a particular x-ray which is
needed first? What kind of a "jaw x-ray" are you hoping to have done?
How much will that x-ray cost? And what does your dentist have to say
about this trouble you're having?
Webby
----------------
Subject: 1992 Congressional Hearing
Date: 8/12/98 10:02 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081217020000.NAA21501@ladder01.news.aol.com>
Some of you might think I have too much to say about too much.
In 1992, I was invited to provide oral and written testimony at a
Congressional Hearing having to do with my experiences as a TMJ
implant patient. It's a long story, but suffice it to say that there
were some mighty shady dealings going on in Washington DC at that
time...
My oral testimony was censored. My written testimony was censored.
And maybe some of you just don't understand why this is important to
all of us... every single one of us. Are all of you ready to have
your voices taken away from you in a country which is supposed to be
all about freedom of speech? Until you realize the existence of
corruption ... in some very high places, you may not understand why I
have as much to say as I do.
You don't need to understand all the details to realize that something
just doesn't add up. BTW, my own congressional representative is
going to get the testimony in the record... just not in the one where
it was supposed to have been.
Webby
-----------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/12/98 10:05 AM Pacific Daylight Time
From: KGoldenk
Message-id: <1998081217055000.NAA01332@ladder03.news.aol.com>
Hi All. I haven't read or posted in a while and I feel the need to
respond to the TMJ/TMD specialist quest. My doctor is a DDS, MD. Yes,
he has a dental and medical degree. His treats TMJ patients with
respect, compassion and competence. I've known him since 1984.
Because he is an MD, my insurance does not hassle me. There are other
DDS/ MD's at UC San Francisco Medical Center's TMJ Clinic. I do not go
there myself and have heard mixed
feelings about the clinic. The point is, there are doctors out there
who can help, you just have to search. After 15 years and 21
surgeries, I'm still actively searching for answers. I also go to a
pain center for my meds. Again they are MD's and do give me what ever
meds I need.
Next, I get Social Security Disability benefits. It took 18 months and
two appeals, but I got it granted in 1991. I did all the paper work
and appeals myself and the 7 year review myself, no attorney! It can
be done, you must be persistent. SSD reviewers are counting on you to
stop asking for benefits after the first 2 denials. The Admin. Law
Judge I got, granted my benefits within 5 minutes. SO, KEEP ON
TRUCKING, KEEP ON MOVING, AND GO GET WHAT YOU
NEED. RIGHT ON! (This shows you how old I am.) Take Care All.
Kathy G.
-----------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/12/98 10:14 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081217142600.NAA02337@ladder03.news.aol.com>
Hello Kathy G.,
What surgeries have you had done? While traveling recently and
visiting with some maxillofacial surgeons and teams, I was asked "who
made the decision of no more surgery?" I found this to be an almost
impossible question to answer.
Maybe you understand why such a question is so difficult to respond
to.
I had hoped that you might have responded to my post asking if you're
still in need of any information from patients who have undergone a
"jaw stretching" procedure. Maybe you'll be responding in another
post. I'll keep a eye out for it.
In California, I don't think my insurance cares whether my
maxillofacial surgeon is a DDS or a DDS, MD. It is the procedure
which they decide as to medical necessity. Maybe it's different where
you are. This is kind of a touchy issue, isn't it?
Webby
------------------------
Subject: Repost: TMJ and the Multiple surgeried joint
Date: 8/12/98 10:36 AM Pacific Daylight Time
From: J2S2 Hart
Message-id: <1998081217363600.NAA25493@ladder01.news.aol.com>
NOTE: This is a repost of an original posting. If you wish to reply
via e-mail, please do so by completing a "compose mail" form (Control
+ M) and putting the screenname RealityTX in the "TO" box.
Subject: TMJ and the Multiple surgeried joint
Date: Wed, Aug 12, 1998 05:23 EDT
From: RealityTx
I want to discuss the current research that may be known on the
multiple surgeried tmj patient. Sorry I am off topic but could not
find the tmj folder.
-----------------------
Subject: Who are the research subjects?
Date: 8/12/98 11:09 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081218093900.OAA08646@ladder03.news.aol.com>
Does anyone else wonder WHO the people are who are the subjects in
research for studies such as for those of the mulitply operated TMJ
patient?
I wonder who the researchers want to study... I wonder what they hope
to learn... I wonder about many things.
Would I agree to being a subject in such a study program? What would
I need to know in order to give anyone an answer? What would all of
you need to know?
Webby
----------------------
Subject: The TMJ in ... Switzerland?
Date: 8/12/98 11:55 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081218555000.OAA04860@ladder01.news.aol.com>
Just as an example, I selected the country of Switzerland for the
question.
What do any of us know about the care and treatment of conditions
called TMD in countries outside of the US and Canada? How many people
have the same problems there as we do here... percentage wise, that
is? What do we have in common and what do we know about what we do
not have in common?
If you were say, in Spain... would you expect all of your
circumstances to be the same as they are here?
Pick the country of your choice, and write something about what you
think it would be like for you if you lived there rather than here (US
or Canada).
Webby
----------------------------
Subject: Re: Typo Re: Calling TMJ Something Else for Ins Co Purposes
Date: 8/12/98 5:59 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081300591200.UAA03314@ladder03.news.aol.com>
Well, thanks so much for the warning.
A Companion in TMJ
GILLYANNEB@aol.com
---------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/12/98 7:09 PM Pacific Daylight Time
From: KGoldenk
Message-id: <1998081302094200.WAA14748@ladder03.news.aol.com>
Hi. I am a Teflon/Proplast survivor. In 1984 I had installed after
many kinds of"non-invasive procedures, the Vitek implant in my TMJ's.
I did have degenerative joint disease. At the age of 23 my cartilidge
discs were gone. From 1984-1989, 5 years I was pain free. During that
time, I married, had two kids and a professional career. In 1988, the
FDA recalled the implants, do to severe damage it caused in the
joints. The microscopic material
erodes bones. If the implants were removed intact, you had a good
chance of further saving your joints from more complications. If not,
the damage was done. My implants had broken down. The multiple
surgeries I've had include, removal of the devices, endless
cleanings/scrapping off of the Proplast, rib grafts for joint
reconstruction, titanium sockets installed, lymph nodes removed
containing Proplast, removal of lots of scar tissue. So that's the
story.
I am now and have been since 1990, legally disabled as 19 of the 21
surgeries have been performed since 1989, also the year of our
earthquake! Oh, and since my mouth stretching, I am the same, meaning
not to good. I presently take MS Contin and Roxanol for break thru
pain. I have every faith that someone out their will come up with a
solution. I have to have faith, as living with this for another 50
years is unimaginable to me. Also, the doctor, an
American for Texas, who designed the original implant, to avoid
litigation moved to Switzerland and is selling his product there.
I hope this answers some of your questions.
Kathy G.
--------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/12/98 8:32 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081303321500.XAA18698@ladder01.news.aol.com>
Subject: Re: Jaw popping/ TMJ Specialists
Date: Wed, Aug 12, 1998 22:09 EDT
From: KGoldenk
Message-id: <1998081302094200.WAA14748@ladder03.news.aol.com>
Hi. I am a Teflon/Proplast survivor. In 1984 I had installed after
many kinds of"non-invasive procedures, the Vitek implant in my TMJ's.
I did have degenerative joint disease. At the age of 23 my cartilidge
discs were gone. From 1984-1989, 5 years I was pain free. During that
time, I married, had two kids and a professional career. In 1988, the
FDA recalled the implants, do to severe damage it caused in the
joints. The microscopic material
erodes bones. If the implants were removed intact, you had a good
chance of further saving your joints from more complications. If not,
the damage was done. My implants had broken down. The multiple
surgeries I've had include, removal of the devices, endless
cleanings/scrapping off of the Proplast, rib grafts for joint
reconstruction, titanium sockets installed, lymph nodes removed
containing Proplast, removal of lots of scar tissue. So that's the
story.
I am now and have been since 1990, legally disabled as 19 of the 21
surgeries have been performed since 1989, also the year of our
earthquake! Oh, and since my mouth stretching, I am the same, meaning
not to good. I presently take MS Contin and Roxanol for break thru
pain. I have every faith that someone out their will come up with a
solution. I have to have faith, as living with this for another 50
years is unimaginable to me. Also, the doctor, an
American for Texas, who designed the original implant, to avoid
litigation moved to Switzerland and is selling his product there.
I hope this answers some of your questions.
Kathy G.
__________
Hello Kathy G. and thank you for sharing this information about your
surgical history.
I'm very familiar with the Vitek (Proplast) disaster. I'm familar
with all of it... too familiar. There are some surgeons who have felt
for several years now that grafting procedures in Proplast patients is
contraindicated. Did your surgeon mention this concern to you?
I do find the information about Charles Homsy particularly
interesting... everytime I am reminded about it. Why would Dr. Homsy
(Ph.D.) be manufacturing a product that NO ONE is using???? Do you
know where this "product" is being used?
IF it is being used somewhere on this planet by surgeons ... is it
being placed in human subjects (research), nonhuman subjects
(veterinarian), or ....in patients?
Think people.... THINK.
Webby
-----------------------
Subject: Re: Dental Work
Date: 8/12/98 8:39 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081303395100.XAA19814@ladder01.news.aol.com>
I appreciate your response and I accept your apology.
I understand you've had a myriad of TMJ problems for a great number of
years, and for that reason I wish you only the best.
Since you've been "playing the game" with all the chess pieces on the
TMJ gameboard, perhaps you'd like to share your version of coverable
terminology with me. You may e-mail me at Gillyanneb@aol.com. I am
interested in learning, my dear, not to cheat but to prevail.
A Companion in TMJ
GILLYANNEB@aol.com
----------------------][
Subject: Insurance woes of my own
Date: 8/12/98 8:41 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081303410700.XAA29103@ladder03.news.aol.com>
Let's share some information about insurance companies and how they
manage "TMJ" or "TMD" and the care people find themselves needing.
Just as a little example, I'd like to share with you the way my
insurance company managed my need for an Emergency Tracheotomy Team in
the operating room.
I was planning for total joint replacement surgery. My airway
management was a serious concern to the anesthesia team and they
wanted an Emergency Tracheotomy Team to be in the O.R. on standby. My
insurance company announced that they "wouldn't cover it." I ASKED
why not!!! "They" said it was because it wasn't necessary.
Wasn't necessary??? Okay........... when does this emergency become
necessary? "They told me that the surgeons and the anesthesia team
would just have to place the Trach-Team on standby. AND.......... if
their services were needed.... they COULD call them in.
Now let's think about this for a bit. I asked, can we have the team
standby and I will pay for this myself IF their services aren't
needed?????? THE ANSWER????????? NO..... you can't. They can't be
on standby UNLESS they have preauthorization from US.
NOW............ don't suggest to me that I don't know about fighting
insurance companies. I KNOW about fighting EVERYBODY
involved..........
I just want to know WHY it is that I have to fight all of you too.
And you have the nerve to call this a support environment. Think
about it.
Webby
------------------------
Subject: Re: Typo Re: Calling TMJ Something Else for Ins Co Purposes
Date: 8/12/98 8:43 PM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081303432700.XAA29453@ladder03.news.aol.com>
Oh Please!!! Do you really think an insurance company is going to go
so far as seeing if this person has an aol account? I do believe you
are stretching quite a bit here. While I do agree with you about not
coming up with new names and excuses for TMJ/TMD, it is absolutely
ridiculous to think insurance companies would have time to monitor our
aol accounts. And, who are you, by the way, that you seem to know so
much more than the rest of
us anyway? We are all entitled to our opinions, as you are entitled to
yours. However, your posts are beginning to sound like censorship to
me, IMHO.
Be Well...
Patty
---------------------------------
Subject: Re: Typo Re: Calling TMJ Something Else for Ins Co Purposes
Date: 8/12/98 9:28 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081304283300.AAA06064@ladder03.news.aol.com>
Subject: Re: Typo Re: Calling TMJ Something Else for Ins Co Purposes
Date: Wed, Aug 12, 1998 23:43 EDT
From: PattyDFX1
Message-id: <1998081303432700.XAA29453@ladder03.news.aol.com>
Oh Please!!! Do you really think an insurance company is going to go
so far as seeing if this person has an aol account? I do believe you
are stretching quite a bit here. [clip]
_______
Another thought came to mind after sending my previous reply to you.
Do you realize how you all sound? First you carry on about how
insurance won't cover this and that.... basically most posts about
"insurance" are those with complaints about insurance not helping
them.
Why do all of you seem to think that suddenly when a car crash
happens, insurance companies are going to suddenly be thrilled to
cover whateve it is that happens to someone... the only catch being
that you have to use the proper language.
Do you think that matters involving the fault of an insured don't
immediately send out messengers to the attorneys who protect the
assets of that insurance company? Do you think they're all going to
roll over and play dead?... they're all just waiting for people to use
the "right words" so they can happily use up the company's money.
Well, lawyers are the people whose jobs require that they advocate for
their clients. Have you forgotten this? Have you ever been involved
in litigation involving the question of "fault"? If not, don't think
you know about how it is until you've spent years fighting the ugly
monsters. (I am not limiting this to matters such as auto crashes
either.)
Again, think about it.
Webby
----------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 6:14 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081313144600.JAA26000@ladder01.news.aol.com>
Copper - I know - that's why I quit reading these boards a year ago.
I'm sorry to see the same thing is still going on- by the same person.
Isn't there a BOARD LEADER to work in this??
------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 7:43 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081314430600.KAA12928@ladder03.news.aol.com>
You wrote:
"Copper - I know - that's why I quit reading these boards a year ago.
I'm sorry to see the same thing is still going on- by the same person.
Isn't there a BOARD LEADER to work in this??"
What is a board leader?
What same thing do you see still going on here?
I see something going on here too but I don't know if it's what you
see.
What same person are you talking about? Is it the Webby by chance?
or should we all just guess?
Chang (the other half)
-----------------------
Subject: Re: Insurance woes of my own
Date: 8/13/98 7:50 AM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081314503800.KAA13713@ladder03.news.aol.com>
Briarnet:
When I was in my 30's, my brilliant, intellectual, tactful and
wonderful-with-people husband once told me that as long as I came on
to people like a runaway, fanatical train with my own agenda (even
though I might be 100% correct, morally, ethically, factually or
otherwise), leading the way like some kind of "smoking gun" would
never get me anywhere with folks and that I would be able to clear a
room in record time. We were talking about office
politics at the time.
For the most part, it's your approach, not necessarily your
content. After the above was pointed out to me, I had to admit my
approach to people failed nearly 99% of the time, and I had to learn
the art of two-way communication, which skills I had never developed
as a child. For my part, I went on to communicate successfully
nearly 99% of the time, I'm heartened to say.
I mean this as a kindly explanation, not as a soapbox gesture.
A Companion in TMJ
GILLYANNEB@aol.com
---------------------------------
Subject: Re: Insurance woes of my own
Date: 8/13/98 9:25 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081316251100.MAA23658@ladder03.news.aol.com>
You wrote:
"A Companion in TMJ
GILLYANNEB@aol.com"
What exactly does that mean?
Can you please define TMJ for me?
Chang
co-author
Library of Congress Cataloging-in-Publication Data
Webby & Chang
The TMJ Iatroepidemic : Unintentional Confessions of a Profession
/ by Webby & Chang. 1st ed.
Includes an index and glossary.
ISBN 0-9657526-0-7 (pbk.)
1.Temporomandibular joint -- suffering -- issues I Title.
2.Chronic disease--Iatroepidemic aspects.
3.Self-help-United States.
4.Internet -- usenet -- social -- Netcanting
97-72277
CIP
-----------------------------
Subject: Re: Insurance woes of my own
Date: 8/13/98 12:05 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081319055300.PAA03453@ladder01.news.aol.com>
GiilyanneB,
If you don't like the messenger, and you disregard the message too...
well, it's your choice. Do as you please. I'm not trying to win any
contests here,"my dear"... and BTW, I hate to mention this to you...
but you *still* need a little help in the communication department.
You can learn whatever you want from whoever you listen to. I see
you've been advised not to listen to Webby no matter what is said.
Webby
--------------------------------
Subject: Re: Insurance woes of my own
Date: 8/13/98 12:22 PM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081319220000.PAA05366@ladder01.news.aol.com>
Webby and Chang...
I and all others would love to share opinions and ideas with you.
However, you seem not to be sharing, you seem to be ordering us to
listen to you and disregard all others. I agree with Gilly, it is the
way you are shoving your opinions at us and expecting us to take them
as our own. Please, let's keep things moving along smoothly here.
People here and everywhere, do not need this kind of strife. And if
you are experts on TMJ
and various and sundry other things, I fail to see why Chang asked for
a definition of TMJ. What might the point of that have been? This is
the last I will say on this matter, as I can't believe I am even
taking the time to stoop to this level in the first place. Good luck
to both of you and I certainly hope you find some peace and pain free
days in your lives.
Be Well...
Patty
-----------------------
Subject: Re: Multiple surgeried TMJ patient and implant rejection
Date: 8/13/98 2:35 PM Pacific Daylight Time
From: Tim94283
Message-id: <1998081321352600.RAA01705@ladder03.news.aol.com>
Steven, my prayers are with you, don't give up. i am sure there are
alot of success
stories even after surgery but you don't always hear about them
because the people are not always looking for support, they are
probably leading a fairly normal life. i am still seeking further
treatment but i am limited because no ins coverage. i have heard dr
mark piper md dds in florida is good. GOD BLESS, TIM
----------------------------
Subject: EVERYONE GIVE IT A BREAK!!!!
Date: 8/13/98 3:31 PM Pacific Daylight Time
From: Tim94283
Message-id: <1998081322310600.SAA29562@ladder01.news.aol.com>
TO EVERYONE WHO THINKS THEY HAVE ALL THE ANSWERS
DON'T LET YOUR MIND WANDER IT IS TO LITTLE TO BE LEFT ALONE.
LET'S MOVE ON. GOD BLESS ALL WHO ARE HURTING, DON'T GIVE UP.
TIM
--------------------
Subject: Re: EVERYONE GIVE IT A BREAK!!!!
Date: 8/13/98 5:13 PM Pacific Daylight Time
From: Scuba Soul
Message-id: <1998081400133400.UAA22767@ladder03.news.aol.com>
I have to agree with you, Tim.
I come here to learn about the experiences that you all are willing to
share and to share some of my own if I can. Not to put up with
somebody's attitude. I adore people's knowledge. But ... please ...
there is no reason in this world for misusing this board by talking to
other people like that, if they come here hoping to find some helpful
answers.
Take care,
Elke
------------------------
Subject: Re: Multiple surgeried TMJ patient and implant rejection
Date: 8/13/98 5:58 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081400585300.UAA29083@ladder03.news.aol.com>
Dear Tim:
I am a TMJ patient (6 mos now) and I'm moving to Melbourne,
Florida in December 1998 (or TRYING TO) but this TMJ thing is really
messing up everything time-wise).
You mentioned a doctor in Florida. Could you please tell me what
you know of his location (what city, town). I'd be most appreciative.
I've got to keep treatment going, no matter where I live, and I live
in Houston now. Good Florida TMJ dentists/doctors are rare in Florida
(they're also rare in Houston with 4 million people, surprisingly),
and I'm gonna need one when I get there.
Any help you can give me will be most appreciated.
A Companion in TMJ
GILLYANNEB@aol.com
----------------------------]
Subject: Re: Multiple surgeried TMJ patient and implant rejection
Date: 8/13/98 6:00 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081401005100.VAA20162@ladder01.news.aol.com>
Dear Tim:
I surely would like to hear about any success stories from
orthoscopic surgery (the needles which are inserted into your jaw and
thru the use of laser the scar tissue is zapped).
I want this surgery desperately, but my $40,000 TMJ Dentist wants
me to take the conservative route first. Sometimes I think things are
really simple - follow the money and you'll see who has the most to
gain.
Thanks for listening.
A Companion in TMJ
GILLYANNEB@aol.com
------------------------
Subject: Re: EVERYONE GIVE IT A BREAK!!!!
Date: 8/13/98 6:02 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081401023100.VAA29615@ladder03.news.aol.com>
Well said, Scubasoul !!!!!
A Companion in TMJ
GILLYANNEB@aol.com
--------------------
Subject: Re: The Term TMJ
Date: 8/13/98 6:11 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081401113400.VAA01099@ladder03.news.aol.com>
Chang -
I don't know who you are, but just for YOU, I'm gonna give you an
alternative meaning.
THE MONEY JOINT
My suggestion is: Do an in-depth search about TMJ on the Web,
and you'll learn all about it and its many faces, if you're really
grasping for a definition, which I doubt you are.
A Companion in TMJ
GILLYANNEB@aol.com
-----------------------------------------------------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 6:45 PM Pacific Daylight Time
From: MetroWestT
Message-id: <1998081401453200.VAA26758@ladder01.news.aol.com>
Regarding:
HeyMom can do whatever she pleases. She can ignore my posts or she
can insult me... I don't care. But this does leave a lasting
impression on me about the people who post to AOL's PRC. Why don't
ANY of you come out into Usenet (alt.support.jaw-disorders or
sci.med.dentistry) and participate in discussions there?
Perhaps one of the reasons why some folks hesitate to go to Usenet is
due to the abrupt tone of many of your posts. I know that most people
come to this folder for discussion, ideas, help and support. I also
know that you can be a very compassionate person when you want to be,
yet you seem to like adding strife in these folders at times. There
is really no need for this Webby,, and I do hope you will find
yourself able to contribute in a positive
way since everyone who visits these boards could always benefit from
what others such as yourself have gone through. I look forward to
sharing of ideas in the future rather than conflict since one tends to
learn more when ideas are presented in a positive light.
Take care
metrowest
---------------------------------
Subject: Re: The Term TMJ
Date: 8/13/98 7:08 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081402082800.WAA09771@ladder03.news.aol.com>
Subject: Re: The Term TMJ
Date: Thu, Aug 13, 1998 21:11 EDT
From: GILLYANNEB
Message-id: <1998081401113400.VAA01099@ladder03.news.aol.com>
Chang -
I don't know who you are, but just for YOU, I'm gonna give you an
alternative meaning.
THE MONEY JOINT
My suggestion is: Do an in-depth search about TMJ on the Web,
and you'll learn all about it and its many faces, if you're really
grasping for a definition, which I doubt you are.
______
It's Webby here, not Chang but either of us could respond to this.
Ahh ... The Money Joint. Who said that? I know who, do you? And to
further complicate things, it's in the book authored by Webby & Chang.
Did you know that?
Webby
----------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 7:09 PM Pacific Daylight Time
From: Milocat4
Message-id: <1998081402092300.WAA00700@ladder01.news.aol.com>
This group seems like such a wonderful supportive group. I suggest
that everyone TOTALLY ignore the negative poster(s). Just talk to
each other the way you were a few days ago. Even though I dont have
tmj I have enjoyed reading here and watching how nice you all are.
Keep it up : )
Pat
(aka Milocat4)
---------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 7:10 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081402102400.WAA00887@ladder01.news.aol.com>
Metrowestt, what do you know of my writings? I don't recognize your
screen name.
Webby
----------------------------------
Subject: Re: your book
Date: 8/13/98 7:13 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081402135400.WAA01491@ladder01.news.aol.com>
Chang writes:
<<<Chang
co-author
Library of Congress Cataloging-in-Publication Data
Webby & Chang
The TMJ Iatroepidemic : Unintentional Confessions of a Profession
/ by Webby & Chang. 1st ed.
Includes an index and glossary.
ISBN 0-9657526-0-7 (pbk.)
1.Temporomandibular joint -- suffering -- issues I Title.
2.Chronic disease--Iatroepidemic aspects.
3.Self-help-United States.
4.Internet -- usenet -- social -- Netcanting
97-72277
CIP>>>>>
To Webby - please tell me the Publisher of this book. What year was
it published? What author do you have it listed under if not *Webby
and Chang* I'd really like to see your book, but my library doesn't
have it. A more extensive search can be made if I had the Publisher
and the year.
-----------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 7:24 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081402244200.WAA03135@ladder01.news.aol.com>
Subject: Re: No TMJ specialists in the USA
Date: Thu, Aug 13, 1998 22:09 EDT
From: Milocat4
Message-id: <1998081402092300.WAA00700@ladder01.news.aol.com>
This group seems like such a wonderful supportive group. I suggest
that everyone TOTALLY ignore the negative poster(s). Just talk to
each other the way you were a few days ago. Even though I dont have
tmj I have enjoyed reading here and watching how nice you all are.
Keep it up : )
______
Well, well, well... milocat4. Now I can see that you're a real team
player. Ignore who? Ignore what?
And as for the rest of you... this is exactly what I was writing
about. Milocat4 is here to perpetuate the suffering caused by the TMJ
iatroepidemic. What other reason on earth could there be for such an
uncaring comment... not uncaring about me or my partner... uncaring
about all of you!!!!
Shame, shame, shame on milocat4. And I suppose no one here other than
me will tell you so... and I suppose all the others will carry on
about the mean old Webby.
... Woof Woof Woof
---------------------------------]
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 10:29 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081405295400.BAA07351@ladder03.news.aol.com>
An English professor with a specialty in 18th Century literature is
called....an English professor.
A professional baseball player who is a bullpen closer is
called......a
baseball player.
Same difference with the TMJ specialty. It gets really tedious when
the same person keeps showing up on the board to quibble over
the tiniest of details, and to create tension and anxiety in an area
intended solely for support and the helpful exchange of information.
---------------------------
Subject: Hidden Posts
Date: 8/13/98 10:30 PM Pacific Daylight Time
From: PRCS Taste
Message-id: <1998081405301300.BAA07386@ladder03.news.aol.com>
Hello Everybody,
After receiving a number of posts concerning the conversations here in
this folder I have spent about an hour tonight hidding several of
them.
This is not a battle ground, and no one deserves to be beaten up in
here.
Lets try to remember that dealing with chronic pain isn't something
where one cure works for everyone, or that any one person knows
everything.
I've tried to be as fair as I could, and I hope that you'll understand
why we can't and will not allow personal attacks to continue within
these folders.
Evee
PRC co-Forum Leader
-----------------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 10:37 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081405372800.BAA28734@ladder01.news.aol.com>
HeyMom (hi, by the way!), I completely agree. When one
person consistently shows up, and passes around a great deal
of misinformation in the most hostile manner imaginable,
I think it scares off a lot of people who really need this board.
I also left for several months, hoping the member in question
would no longer be here when I tried again--and what a pleasure
it has been, the last few weeks, to find out such was the case!
Now, once again (how many times has this happened?), the
TMJ board is on its way to becoming an impossible place to
be.
Can the PRC please step in, and handle this situation?]
----------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/13/98 10:52 PM Pacific Daylight Time
From: Milocat4
Message-id: <1998081405523700.BAA00204@ladder01.news.aol.com>
Meg, it was done as you were posting. Hopefully, this will put a stop
to the negativity. As I said before, you are a wonderful, supportive
group for TMJ. Keep up the good work. Here is the link that PRCS
Taste wrote. Hidden Posts It went up right before this one.
Pat
(aka Milocat4)
-----------------------------
Subject: surgery
Date: 8/14/98 6:05 AM Pacific Daylight Time
From: Tim94283
Message-id: <1998081413051400.JAA29924@ladder03.news.aol.com>
i would only say to have surgery as a very, very, very , last resort
to anyone,
but if you happen to be one who has had surgery or your case has no
other solution
don't let the neg stuff dictate to you. above all seek GOD'S WISDOM in
everything you do. tim dont give up.
---------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 6:14 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081413144400.JAA21193@ladder01.news.aol.com>
Re: Hidden Posts: THANK YOU ! It's greaty appreciated. Hi MeghanNYC!
Still having trouble, huh? I have my ups and downs too. Good to see
you! We DO need these boards.
------------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 7:55 AM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081414555600.KAA00523@ladder01.news.aol.com>
Evee...
Thank you so much for stepping in :)
Be Well...
Patty
------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 8:13 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081415133200.LAA11800@ladder03.news.aol.com>
Subject: Re: Hidden Posts
Date: Fri, Aug 14, 1998 10:55 EDT
From: PattyDFX1
Message-id: <1998081414555600.KAA00523@ladder01.news.aol.com>
Evee...
Thank you so much for stepping in :)
__________
Patty thinks that steppin in was helpful. Patty isn't thinking at all
about how much distress this has caused me and Chang. We have been
singled out in this group for no good reason except that no one wants
us sharing important ideas in this place... because that might cause
an enlightenment of the "people" represented in the folder... and that
is not allowable here.
I think this post by Patty is insulting to me... it is negative in
everyway, yet it is perfectly acceptable to the "rules" of the road.
Hmmmm. I suppose none of you think there is anything strange about
what you've seen going on here. No, I don't suppose anyone would.
That requires thinking... and thinking is not allowed... only bully
tactics.... yes, you are all nothing more than bullies. It's been
this way for as long as I can remember and it is as negative a thought
as I can muster at the moment.
Webby
------------------------
Subject: Re: Klonopin
Date: 8/14/98 8:19 AM Pacific Daylight Time
From: TCHR PETE
Message-id: <1998081415194800.LAA02938@ladder01.news.aol.com>
Laura-
I take Klonopin three times a day and it does help with
anxiety and muscle relaxation. I got a little drowsy at first, but
never a "high" feeling like you can get with the other related drugs.
That's why docs like it because it has less "addictive" qualities.
----------------------------
Subject: Re: No TMJ specialists in the USA
Date: Fri, Aug 14, 1998 01:37 EDT
From: MeghanNYC
Message-id: <1998081405372800.BAA28734@ladder01.news.aol.com>
HeyMom (hi, by the way!), I completely agree. When one
person consistently shows up, and passes around a great deal
of misinformation in the most hostile manner imaginable,
I think it scares off a lot of people who really need this board.
I also left for several months, hoping the member in question
would no longer be here when I tried again--and what a pleasure
it has been, the last few weeks, to find out such was the case!
Now, once again (how many times has this happened?), the
TMJ board is on its way to becoming an impossible place to
be.
Can the PRC please step in, and handle this situation?
----------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/14/98 8:27 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081415272400.LAA13218@ladder03.news.aol.com>
I demand of PRCS Taste that complaints such as this are not allowed.
The vagueness in suggesting that someone here is a member in question
of delivering misinformation I want to know WHO MeghanNYC is referring
to.
I am not going to allow someone to suggest that I am the one who is
being publically accused of this:
"When one
person consistently shows up, and passes around a great deal
of misinformation in the most hostile manner imaginable,
I think it scares off a lot of people who really need this board."
The only person who has been attacked in here is really two people.
It is Webby and it is also Chang. As for the rest of you, you have
all ganged up against us by passing around RUMORS suggesting that
Webby or Chang or both have caused a great tension in this folder.
This is a lie. This is propoganda... and I will not stand by and
allow AOL's staff (volunteer or otherwise) to smear our reputations in
this way.
Again, I demand that PRCS Taste DEMAND of the people in this group to
cease with this horrible conduct which is intended to mislead people
into not believing a word I or Chang write here.
This is a serious situation and I am waiting for public reply. THIS
IS NOT A MATTER for behind the scenes communications. I want it all
out in front where our reputations will be given back the respect we
deserve.
Webby
----------------------------
Subject: 1992 Congressional Hearing
Date: Wed, Aug 12, 1998 13:02 EDT
From: BrierNet
Message-id: <1998081217020000.NAA21501@ladder01.news.aol.com>
Some of you might think I have too much to say about too much.
In 1992, I was invited to provide oral and written testimony at a
Congressional Hearing having to do with my experiences as a TMJ
implant patient. It's a long story, but suffice it to say that there
were some mighty shady dealings going on in Washington DC at that
time...
My oral testimony was censored. My written testimony was censored.
And maybe some of you just don't understand why this is important to
all of us... every single one of us. Are all of you ready to have
your voices taken away from you in a country which is supposed to be
all about freedom of speech? Until you realize the existence of
corruption ... in some very high places, you may not understand why I
have as much to say as I do.
You don't need to understand all the details to realize that something
just doesn't add up. BTW, my own congressional representative is
going to get the testimony in the record... just not in the one where
it was supposed to have been.
Webby
------------------------------
Subject: Re: 1992 Congressional Hearing
Date: 8/14/98 8:35 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081415350500.LAA04483@ladder01.news.aol.com>
I guess this matter doesn't concern anyone in this folder. Imagine
that...
Webby
---------------------------
Subject: Re: Dr. James P. Boyd, D.D.S.
Date: 8/14/98 8:37 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081415374900.LAA04786@ladder01.news.aol.com>
Re: Dr. James P. Boyd, D.D.S.--
It's okay if tchrpete posts the name of an individual, but when Webby
replies... it's hidden.
What is this all about, Pete? What is this all about PRC team??? Put
my post in reply back up NOW. How dare you remove my reply.
Webby
---------------------------------
Subject: False accusations- Re: No TMJ specialists in the USA
Date: 8/14/98 8:57 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081415574100.LAA06786@ladder01.news.aol.com>
>I will reply within the post with > to my comments.
Subject: Re: No TMJ specialists in the USA
Date: Fri, Aug 14, 1998 01:37 EDT
From: MeghanNYC
Message-id: <1998081405372800.BAA28734@ladder01.news.aol.com>
HeyMom (hi, by the way!), I completely agree.
>MeghanNYC, you completely agree with what exactly?
When one
person consistently shows up, and passes around a great deal
of misinformation in the most hostile manner imaginable,
I think it scares off a lot of people who really need this board.
> Who is this "one person" who consistently shows up?
> What misinformation is this person passing around?
> In what way is that person doing this passing in "the most hostile manner imaginable"?
> Who, specifically, are all the people who have been scrared off and who really NEED this board?
> What do those timid people need from what normally appears on this board?
> Who needs those timid people to be here?
I also left for several months, hoping the member in question
would no longer be here when I tried again--and what a pleasure
it has been, the last few weeks, to find out such was the case!
>Again, which member is "the member in question"?
> What do you contribute of substance to this board?
> Why is it that you need this board?
> How does this board help you promote what you promote?
Now, once again (how many times has this happened?), the
TMJ board is on its way to becoming an impossible place to
be.
> Who is making this an impossible place to be?
> What is it that makes you so uncomfortable about whatever it is that "this person" posts?
> Are you simply not interested or is it threatening to your politics?
Can the PRC please step in, and handle this situation?
>As in the PRC Team Leader? PRCS Taste stepped in but I have to tell you that she, Evee, >stirred up a hornet's nest by following the pressure from the angry mob in the folder.
>It's bad politics, you people are into, MeghanNYC.... real bad. And believe me, someone >will be accountable for what is going on here.
>All of you who agree that "someone" is passing around scarey misinformation are all >obviously just a part of someone's disinformation campaign. I've been witness to these >tactics for far too many years to be fooled. So give it up. All of you who have complained >about "the someone" as well as those of you have sit back an silently allow this to go on >are all as obvious as it gets.
>Webby
----------------------------
Subject: tmj surgery?
Date: 8/14/98 9:19 AM Pacific Daylight Time
From: Serena615
Message-id: <1998081416192500.MAA18728@ladder03.news.aol.com>
i have suffered for 10 years with tmj have seen a number of oral
surgeons
who only make the night guards which at this point do not work
i have seen a chiropractor-that did not work-i suffer daily from my
jaw
pain-have any of you had surgery or is there another
route you have found helpful-acupuncture or a specialist that deals
with tmj
i am in the boston area.
any & all info would be greatly appreciated.
thanks in advance.
serena
------------------------------
Subject: Deny my freedom of speech...
Date: 8/14/98 9:58 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081416580800.MAA13616@ladder01.news.aol.com>
Try as you might, you only think this is what you will accomplish.
Remember that good will always triumph over evil. This place is evil
and I do not wish to be remotely thought of as a part of the voice of
the people in AOL's PRC TMD/TMJ Pain folder.
This folder is a disgusting abuse of technology used against humanity.
It is a sickening machine that is here only to consume its prey.
There is no excuse for what is happening in here. I am leaving and
will never return. This should please the powers of the folder.
This is a place where lies are told, and where people are fooled *if*
they are foolable... and if you're not foolable... you are driven out
by the tyrants... I will gladly disassociate myself with the likes of
this group... but I will tell the story about what it is really like
in this place. And to tell the story I do NOT need a computer or
online access. So be prepared to be talked and written about in
various places. You and your screen names
are real to whoever it is who pays the monthy fees for your use of
these accounts. You are all accountable for your conduct. Perhaps
you should think about this... every single one of you!
There is no freedom of speech here in America Online.......
Webby
--------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 10:32 AM Pacific Daylight Time
From: Scuba Soul
Message-id: <1998081417322000.NAA17538@ladder01.news.aol.com>
Thanx, Evee!!!!
Elke :-)
-----------------------------
Subject: Re: Jaw popping
Date: 8/14/98 10:53 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081417530300.NAA29513@ladder03.news.aol.com>
You wrote:
"Perhaps you should make an appointment with a TMJ specialist (not an
oral surgeon) in your area.
Julie"
There is no such thing as a "TMJ Specialist". In the USA if a dentist
calls himself such his license can and should be censured, with the
*high* possibility of revocation.
Wes Shankland needs to straighten you people out. I intend to copy
this to Wes and inform him of what I consider to be his duty to his
own profession, and patients.
Chang
P.S. Are you going to remove Wes Shanklands name from this message
too? Because if you do you had better remove all reference of him from
the entire message database.
----------------------
Subject: Re: Jaw popping
Date: 8/14/98 10:56 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081417561000.NAA20394@ladder01.news.aol.com>
You wrote:
"Actually there is a doctor in my area that has a roadside sign that
specifically states "specialist in TMJ/myofacial disorders."
That is not the same as a board certified specialist, and even so,
this dentist could and should be censured. Note I said censured, not
censored as is the rule here.
Wes Shankland address this issue.
Chang
------------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/14/98 11:00 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081418004400.OAA00597@ladder03.news.aol.com>
You wrote:
"Webby...
Our own PRCSDrWes from the TMJ chats is a TMJ specialist of quite
some renown...Might want to check out some of his chats and/or his
book."
Wes Shankland is a dentist. He is not a board recognized specialist
because no such speciality exists.
Wes, you must address this most important issue that is being abused
here in this group of misinformed people.
Chang
====================
Subject: Hiding More Posts? To Dr. Shankland
Date: 8/14/98 11:24 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081418241200.OAA23713@ladder01.news.aol.com>
Wes,
What is wrong with this group of people, and in particular the PRC
TMJ/TMD folder?
I can't believe what is going on in this place but as you already
know, Webby & Chang don't take kindly to censorship. Wes you need to
speak to these wanna be PRC assistants who seem to be able to judge
who can and who can't post what any old time they want to. I am going
to give this one day and then it's going to the net and further. Do
the right thing Wes and straighten these yahoos out. Tell them they
better put our posts back where they
were.
Bruce Chang
--------------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/14/98 11:29 AM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081418293300.OAA03939@ladder03.news.aol.com>
I did NOT say he was Board Certified in TMJ. Being Board Certified and
being a specialist are 2 different things. Specialist means that the
person concentrates their area of practice on a certain ill and/or
issue. Noone here is claiming that TMJ specialists have board
certification, as we know this certification does not exist at the
present time. We are claiming that these docs limit their practices to
TMJ
disorders...thus, making them specialists.
Be Well...
Patty
----------------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 11:35 AM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081418354100.OAA04704@ladder03.news.aol.com>
I absolutely second the thanks to Evee. A chronic pain support
board is the last place where anyone needs to run into negative
posters.
So, thank you!
----------------------------
Subject: Re: tmj surgery?
Date: 8/14/98 11:37 AM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081418375500.OAA25327@ladder01.news.aol.com>
Actually, I've been doing acupuncture for the last couple of months,
and it doesn't do much for the dysfunction, but it does,
unquestionably,
help me with the pain factor. I'm completely off all pain medication
except for tylenol of ibuprofen. So, I recommend it.
Also, in the Boston area, have you tried the Gelb TMJ clinic
at Tufts Medical Center? A friend of mine goes there, and has
found it very helpful.
------------------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/14/98 11:41 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081418413600.OAA05403@ladder03.news.aol.com>
You wrote:
"I did NOT say he was Board Certified in TMJ. Being Board Certified
and being a specialist are 2 different things. Specialist means that
the person concentrates their area of practice on a certain ill and/or
issue. Noone here is claiming that TMJ specialists have board
certification, as we know this certification does not exist at the
present time. We are claiming that these docs limit their practices to
TMJ
disorders...thus, making them specialists."
You have no idea what you're talking about. It's never going to exist
either. Thats the more important issue but you can't see that for
what it is because you are blinded by something that is very dark and
sinister.
Chang
--------------------------------
Subject: What about these names PRC Taste ? Gonna remove them or are
you selective?
Date: 8/14/98 11:45 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081418451000.OAA05802@ladder03.news.aol.com>
You had better remove this post too. Unless of course the Gelb
brothers are paying someone to post their name here. This place gets
more bizarre by the second.
Chang
"Subject: Re: tmj surgery?
Date: 8/14/98 11:37 AM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081418375500.OAA25327@ladder01.news.aol.com>
Actually, I've been doing acupuncture for the last couple of months,
and it doesn't do much for the dysfunction, but it does,
unquestionably,
help me with the pain factor. I'm completely off all pain medication
except for tylenol of ibuprofen. So, I recommend it.
Also, in the Boston area, have you tried the Gelb TMJ clinic
at Tufts Medical Center? A friend of mine goes there, and has
found it very helpful."
-------------------------------------
Subject: To Webby and Chang
Date: 8/14/98 12:40 PM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081419404000.PAA02975@ladder01.news.aol.com>
Webby and Chang:
I've been reading these messages over the last week or so and am
horrified and more than a little bit puzzled over the tone of your
messages. Yikes! What the heck is going on? Can't you see the havoc
that your messages are causing here. I can only imagine that you do.
I have talked to you, Webby, off and on for a year now, and I have
seen you show compassion to others many times. Where is that
compassion now?
Quite often I print out infor. from these boards that I think might be
helpful to me. I have quite a few from you, Webby that has accumulated
with time. I hope you don't mind but here is a direct quote from a
message you (Webby) posted on Apr. 16, 1998, titled, Usenet comes to
you. " I, the Webby am here to make sure that other patients stand a
chance of knowing better how to protect themselves." You were
referring to your own serious situation
and problems you ran up against with the courts, doctors, system etc.
So, I guess my questions are, What are you here for this time? Is
this the BEST way you have to educate people? Is this the BEST way you
know to inform people? Is this the BEST way to protect them (us) from
what happened to you? I have seen the compassionate side of Webby,
but not lately, I'm afraid. Frankly, I am very disappointed in what I
am seeing here. Please, think again.
Regards,
Snow
------------------------
Subject: To Serena615
Date: 8/14/98 1:01 PM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081420014700.QAA05578@ladder01.news.aol.com>
HI Serena!
I have been having some success with an alternative type of manual
therapy. Its called "Resonant Neuro Access". I live in New England
also. If you or anyone else would like more info. please feel free to
email. I have some info, I can email you.
Regards,
Snow
----------------------
Subject: Re: To Webby and Chang
Date: 8/14/98 1:34 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081420340000.QAA19063@ladder03.news.aol.com>
Subject: To Webby and Chang
Date: 8/14/98 12:40 PM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081419404000.PAA02975@ladder01.news.aol.com>
Snow you wrote:
"Webby and Chang:"
Because of size restraints I won't include your text.
This is the post that started it all. I will stand by Webby on it and
so should you. The rest that followed is the same as it always has
been around this place. If a person has an arthralgic
temporomandibular joint would they go to one of those tmj specialists
because it affects the TMJ; And which of the TMJ specialists would
that be? Would the guy with the roadside sign be the one? How about
for a tumor? How about cancer? How about massive
facial trauma? How about for bruxism? Would that guy with the
roadside sign be the guy; or would all those other examples affecting
the tmj's require different tmj specialists?
I could go on but I'm sure you get my point Snow. This is precisely
why I think Wes should get in here and set the record straight about
who is who in the world of treating the TMJ(from our US perspective),
don't you??
Bruce Chang
Subject: Re: Jaw popping
Date: 8/11/98 3:07 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081122071000.SAA01446@ladder01.news.aol.com>
Perhaps you should make an appointment with a TMJ specialist (not an
oral surgeon) in your area.
Julie
__________
Why is it so difficult for people to remember that in the USA there
isn't any specialist called a TMJ specialist????
Webby"
---------------------------------
Subject: Re: tmj surgery?
Date: 8/14/98 2:10 PM Pacific Daylight Time
From: Serena615
Message-id: <1998081421104900.RAA13990@ladder01.news.aol.com>
meghannyc-thanks so much!
serena
-----------------
Subject: Re: Zostrix
Date: 8/14/98 3:10 PM Pacific Daylight Time
From: Copper260
Message-id: <1998081422105500.SAA01225@ladder03.news.aol.com>
I picked up the store brand, has a roll on applicator. I LOVE this
stuff! gives some relief; thank goodness it can be used 3-4 times a
day.
-----------------------------
Subject: Re: Jaw popping
Date: 8/14/98 3:36 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081422365000.SAA04515@ladder03.news.aol.com>
Dear Mc:
Yes, jaw popping and jaw soreness - sounds like the start of TMJ.
You need to get to a Dentist with TMJ expertise immediately. But I'd
suggest before you go there, you get a panoramic x-ray of your jaw to
take to the dentist. Something in your jaw is probably offline, and
the x-ray will tell the story. The dentist will probably give you a
plastic piece which fits on your upper teeth to correct your bite.
They'll have to take forms of your
upper and lower teeth with that pink gunky stuff, and they should be
able to have the brace done in 2 days from your first dental visit.
Then the dentist suggests between a 3-6 month wait for improvement
while wearing the plastic brace 24-7. Watch out for mouthsores from
the brace - quite normal but rather painful. Get back to us if you
want to talk further.
A Companion in TMJ
GILLYANNEB@aol.com
-----------------------------
Subject: Re: To Webby and Chang
Date: 8/14/98 3:57 PM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081422570900.SAA27304@ladder01.news.aol.com>
To Chang
Of course I get your point. Who wouldn't after all this.. And yes, I
agree that it might be helpful to have Dr. Wes give a clarification.
In my opinion, its not your message thats being disputed, its your
delivery. Sorry, but I would expect better from you. As I said, where
is the compassion? For every action, there is a reaction. And you are
seeing it.
Regards,
Snow
--------------------------
Subject: Re: Zostrix
Date: 8/14/98 5:10 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081500103300.UAA15996@ladder03.news.aol.com>
Wow! What store brand - maybe I wouldn't get it in my eyes so much if
I had a roll applicator! Thanks for the info.
------------------------
Subject: Re: Jaw popping
Date: 8/14/98 5:43 PM Pacific Daylight Time
From: MetroWestT
Message-id: <1998081500435900.UAA10340@ladder01.news.aol.com>
Chang
Again, I have to ask why you feel the need to alienate folks here. I
know you have lots of good info to share, and the manner in which info
is shared can greatly affect those who are reading the message.
Talking "down" to folks, or saying things like "Wes Shankland needs to
straighten you people out; this group of misinformed people; You have
no idea what you're talking about. It's never going to exist either.
Thats the more important issue but you can't see that for what it is
because you are blinded by something that is very dark and sinister.",
is not the way to go in my opinion.
Both you and Webby know me as PRC Metro, so you see, I do know that
you both have a lot to offer everyone here, IF you present yourselves
in a more positive manner. You may think some of us are idiots, but
it is often best if you dont share those thoughts with us. I have
seen many, many people here in PRC exchange ideas and believe it is
important to do so. I for one value what you, and everyone has to
share, as long as it is done in a manner
which reflects some level of respect for those to whom you are
writing.
I look forward to seeing this folder get back to being an informative
supportive one, as I am sure everyone here does.
Take care now
metro
----------------------------------
Subject: Re: Jaw popping
Date: 8/14/98 5:46 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081500460500.UAA10612@ladder01.news.aol.com>
Well said!
----------------------------
Subject: Re: To Webby and Chang
Date: 8/14/98 6:56 PM Pacific Daylight Time
From: JV8675309
Message-id: <1998081501565600.VAA00929@ladder03.news.aol.com>
Since managed care is what pretty much rules our Health Care Delivery
System in the U.S. . . a patient with TMJ should first go to their
primary care doctor with there complaints. This is where the tumor,
etc. . . .should be ruled out. If it is confirmed that the problem is
stemming from the TMJ, then it is then appropriate to refer a patient
to someone, and I have to agree, in my sitiuation, I chose to first
go to a board-certified ENT doc who ordered a CT scan of my sinuses to
rule out a sinus problem. When this came back negative, my primary
doc referred me to our local University's School of Dental Medicine.
This is where I underwent a number of tests for my TMJ and was started
on basic conservative treatment including exerecise, dietary
modification and a night guard. I am forunate because my pain is
nearly gone with these measures.
Although you both come across as somewhat assertive, I can see your
point that TMJ is a real problem in our country and it would be most
beneficial to all of you suffering that board certification for
physicians would be something that the AMA should consider.
Jennifer
------------------------
Subject: Re: Zostrix
Date: 8/14/98 7:13 PM Pacific Daylight Time
From: Copper260
Message-id: <1998081502133400.WAA03438@ladder03.news.aol.com>
I got it at Eckerd; it's Capzasin-P says topical analgesic lotion
capsaicin .025%; this capsaicin is the same active ingredient in the
Zotrix. Made by Thompson Medical Co., Inc. It was buy 1 get one
free; two 2.0 oz bottles for 6.99, instead of a tube (which was big)
for 14.99. I liked the idea of not having it on my hands, being able
to put on any where
i was with little ease. I'm impressed with it; have to go back and
find more 2/1 bottles!
--------------------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 8:38 PM Pacific Daylight Time
From: RealityTx
Message-id: <1998081503385500.XAA16932@ladder03.news.aol.com>
I posted a detailed history of my multiple surgeries...there was no
flaming..now where is it?
---------------------------
Subject: Re: Hidden Posts
Date: 8/14/98 10:24 PM Pacific Daylight Time
From: Milocat4
Message-id: <1998081505245500.BAA01560@ladder03.news.aol.com>
Reality, your post is still there. Check your preferences. It may be
set up to just list unread posts. Set your preferences up to show 7
days. That should help.
Here is the link to show you it is still there. Multiple surgeried TMJ
patient and implant rejection
Pat
(aka Milocat4)
--------------------------
Subject: TMJ/ SO PAINFUL!!!
Date: 8/14/98 10:27 PM Pacific Daylight Time
From: AlliBlu
Message-id: <1998081505274700.BAA21978@ladder01.news.aol.com>
My TMJ has been acting up for 3 weeks, now!!!!! It is worse at night.
Dentist made me a biteguard so I wouldn't grind, but I don't want to
wear that thing!!! How many of you out there get the bad ear pains
along with the pain in the eustacian (sp?) tube??? Does anyone know
any remedies out there that will help with this stuff besides
painkillers? I don't have the option for those right now.
Thanks, Alli
---------------------
Subject: TMJ Specialty
Date: 8/15/98 2:25 AM Pacific Daylight Time
From: PRCS DrWes
Message-id: <1998081509251501.FAA06314@ladder01.news.aol.com>
Friends At PRC,
I've been reluctantly drawn into this Specialty Wars. We went through
this in the autumn of 1996. Webby and Chang, both also friends of
mine, are correct when they state that there's no recognized specialty
of TMJ in dentistry. In fact, there are only 8 recognized ADA
(American Dental Association) dental specialties, whereas the AMA
recognizes well over 280 specialties and sub-specialties. The last
dental specialty was added well over 40
years ago. I'd say that it's time for a change.
A specialist is one who has completed a post-graduate program,
recognized by the ADA or AMA, concentrated in a specific area of study
(eg, oral pathology, internal medicine). A Board Certification is
granted to one who has completed a certain course of study, passed a
written (and usually, an oral) examination, and has presented several
patient cases before an examining board. A specialist usually becomes
board certified, but not all those board
certified do not have to be specialists. For example, many
specialists in neurology have board certifications in psychiatry but
are not specialists in psychiatry.
At the current time, there are two specialty applications before the
ADA: oral radiology and oral medicine. As President of the American
Academy of Head, Neck & Facial Pain, I'm actively involved in getting
a specialty of Orofacial Pain (or something like that) which would
designate a specialty for TMJ diagnosis and treatment. We had applied
to the ADA, then withdrew the application for procedural reasons, and
may re-apply again next year.
Although there is no recognized TMJ specialty, there are many doctors,
like myself, who limit their practices to the diagnosis and treatment
of TMJ and related disorders. Further, many of us are Board Certified
by various academic groups even though the ADA doesn't recognize them.
Understand, this entire thing is political and certainly not practical
or even in the interest of the most important people, our patients.
The ADA is nothing but a trade organization. Professions (eg,
dentistry, chiropractic, medicine, etc) are controlled by individual
states, not a national organization. For example, in Ohio, I am
permitted to list my Board Certifications (I have 3), whereas the ADA
will not permit me to do so. My board certifications are recognized
by courts of law and the Ohio State Dental
Board...the state agency which grants me the right to practice
dentistry. I have chosen to limit my practice to TMJ. Many others
like me are not recognized by the ADA as specialists, yet we limit
their practices and have even obtained the status of board
certification. Another example in dentistry is implantology. The ADA
does not recognize this as a specialty, but there is a board
certification in oral implantology regardless of the ADA's
position.
So, where does that leave us? Realize that: (1) There is no
recognized specialty of TMJ by the ADA; (2) one may be Board Certified
regardless of the ADA (eg, I am personally board certified by three
separate certifying boards, none of which are recognized by the ADA,
but all 3 ARE recognized by the State of Ohio, the courts, and even
the AMA!); and (3) there will, most likely, be a specialty of
Orofacial Pain and Temporomandibular Joint Disorders in
the near future.
As a potential patient and consumer, contact the American Academy of
Head, Neck & Facial Pain (1-800-322-8651 or http://www.aahnfp.org) to
obtain names of doctors around North America (and parts of Europe) who
either limit their practices to TMJ and related disorders or who
highly concentrate their practices in those areas. Personally, I'd
steer away from anyone who advertizes on bill boards, TV, and the
such. But, that's my personal opinion only.
Always get a second opinion if you have doubt about recommended
treatment or invasive treatment.
I hope this helps answer some of the questions which have been posted.
Please maintain civility. Each of you, Webby and Chang included, all
have valid points and no doubt, want to help with all the questions
about TMJ. We ought to be concentrating our efforts against insurance
companies and not one another!
PRCS DrWes
(Wesley Shankland, DDS, MS, PhD
Director, TMJ & Facial Pain Center
Columbus, Ohio)
-----------------------------
Subject: Re: TMJ Specialty
Date: 8/15/98 2:32 AM Pacific Daylight Time
From: PRCS DrWes
Message-id: <1998081509324200.FAA06544@ladder01.news.aol.com>
PRC Folks,
Why not join us for our weekly TMJ chat? Every Wednesday evening at
9:00 PM (EDT) we meet in the Comfort Zone chat room and discuss
Headaches and TMJ Pain.
Please join us.
PRCS DrWes
(Wesley Shankland, DDS, MS, PhD
Director, TMJ & Facial Pain Center
Columbus, Ohio)
----------------------------
Subject: Re: TMJ/ SO PAINFUL!!!
Date: 8/15/98 4:52 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081511521501.HAA21009@ladder03.news.aol.com>
I get the same symptoms. Believe it or not, 1 Sudafed a day helps.
Two is too much. Have you tried the ointment we've been talking
about? Zostrix? That can help too, and applied heat.
Maybe you've read here I'm also into adding ginger into my diet.
Ginger ale, ginger spice, anyway you can add it. I think it helps.
It helps with inflamation.
=====-----------------------
Subject: Re: TMJ Specialty-Dr. Wes
Date: 8/15/98 5:50 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081512503700.IAA24446@ladder03.news.aol.com>
Thank you Dr. Wes!
May peace prevail once again.
Regards,
Snow :-)
-----------------------
Subject: to- realitytx
Date: 8/15/98 6:00 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081513005400.JAA25151@ladder03.news.aol.com>
HI Steven!
Thanks so much for sharing your painful story with us. It never ceases
to amaze me what some TMD sufferers have gone through and still manage
to go on with their lives. I appreciate what you have written and the
infomation it imparts, and also realize the emotional toll it must
have taken to retell it here. Please take care.
Regards,
Snow
--------------------
Subject: Re: TMJ/ SO PAINFUL!!!
Date: 8/15/98 7:22 AM Pacific Daylight Time
From: AlliBlu
Message-id: <1998081514222500.KAA21769@ladder01.news.aol.com>
Thanks so much for the advice, I will try all of that. Do you get the
sensation of a sore throat at times, too? Bu then you swallow and
realize it's not your throat? I can't even lie on my left side in
bed, anymore, the whole left side of my head is in pain. I will try
the zostrix, thanks!
Alli
------------------
Subject: Re: TMJ/ SO PAINFUL!!! to everyone!
Date: 8/15/98 8:24 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081515240700.LAA07685@ladder03.news.aol.com>
All these little things help, but certainly don't cure:
1. Zostrix
2. Heat
3 .Sudafed
4. Advil
5. Keeping your neck straight and not hanging your head.
6. Not overdoing it on the computer!
7. Avoiding stress - easy for the doctors to say, but I quit my
teaching job because of TMJ!
8. Perscription Soma- but I hate to take it.
9. Relaxing your jaw by keeping the tip of your tongue behind your top
teeth and teeth apart, lips closed.
10. Of course , soft food - boring!
11. Adding ginger toyour diet in any form - it helps with inflamation.
12. I think gingseng helps to , but I'm not sure.
13 .Chinese Massage helped me, and gentle Physical Therapy.
14. As much quiet as I can get.
That's all I can think of for now. Anything I left out? Best wishes
to all.
---------------------------
Subject: Re: Jaw popping
Date: 8/15/98 9:47 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081516470400.MAA06703@ladder01.news.aol.com>
You wrote:
"Chang
Again, I have to ask why you feel the need to alienate folks here. I
know you have lots of good info to share, and the manner in which info
is shared can greatly affect those who are reading the message.
Talking "down" to folks, or saying things like "Wes Shankland needs to
straighten you people out; this group of misinformed people; You have
no idea what you're
talking about. It's never going to exist either. Thats the more
important issue but you can't see that for what it is because you are
blinded by something that is very dark and sinister.", is not the way
to go in my opinion.
Both you and Webby know me as PRC Metro, so you see, I do know that
you both have a lot to offer everyone here, IF you present yourselves
in a more positive manner. You may think some of us are idiots, but
it is often best if you dont share those thoughts with us. I have
seen many, many people here in PRC exchange ideas and believe it is
important to do so. I for one value what you, and everyone has to
share, as long as it is done in a manner
which reflects some level of respect for those to whom you are
writing.
I look forward to seeing this folder get back to being an informative
supportive one, as I am sure everyone here does.
Take care now
metro"
I don't understand this place at all. Webby puts up one little reply
and gets attacked for doing so. Then you have the nerve to "hide" our
posts? Then everyone gets to jump on the bashing bandwagon and no-one
says boo about it. It's ok to bash us and leave those posts up for
everyone to see, but you hide ours. I want my posts back, how dare
you steal my words.
I'm not investing any more of my time in this place. It is a dark and
sinister place where the TMJ iatroepidemic is being promoted by way of
intentional ignorance. Wes teaches these people things every week and
yet no-one learns a thing from it. How could they if they still
believe that there is something called a "TMJ specialist" in the USA.
I'll tell you what, any doctor, dentist, medical doctor, etc. that
would present themselves to me as a
"TMJ Specialist" would find themselves in front of the licensing board
that quick. I don't care hopw good they think they are. It's against
the LAW and the dentist/doctor should lose their license to practice.
End of discussion!
As I said, I want my posts back in my mail box and I want them now and
thats all I have to say on the matter.
Chang
P.S. You gonna "hide" this on me too?
------------------------
Subject: Re: 1992 Congressional Hearing
Date: 8/15/98 9:56 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081516564800.MAA07796@ladder01.news.aol.com>
Posted on behalf of Webby
(will this be "hidden" to because of certain names?)
ONE HUNDRED SECOND CONGRESS
Congress of the United States
House of Representatives
Human Resources and Intergovermental Relations Subcommittee
of the Committee on Government Operations
Rayburn House Office Building, Room B-372
Washington, DC 20513-8148
May 27, 1992
Ms. Sabra Broock
Del Mar, California 92014
Dear Ms. Broock:
In the exercise of its oversight responsibilities, the Human resources
and Intergovernmental Relations Subcommittee has been reviewing
federal research and regulatory activities pertaining to the safety
and effectiveness of TMJ implants. You are invited to testify at our
hearing on this topic that is scheduled for Thursday, June 4, 1992 at
10:00 a.m., in Room 2203 of the Rayburn House Office Building. The
hearing will focus on research and FDA regulation of a variety of
temporomandibular joint (TMJ) implants. Your testimony regarding your
experiences will provide invaluable information to the subcommittee in
its consideration of the appropriate role of the federal government in
protecting consumers and funding essential medical research in this
area.
Please arrange to have one copy of your prepared statement delivered
to the subcommittee office by 10:00 a.m. on Monday, June 1, and 75
copies of your prepared statement delivered to the subcommittee by no
later than 10:00 a.m. Wednesday, June 3. Such admission is required in
order to give the Members of the subcommittee an opportunity to study
your statement before the hearing. The typed statement should be
single spaced, if possible. If your prepared statement will require
more than 4 minutes of oral testimony, please be prepared to summarize
it in approximately that time. Your entire statement will be printed
in the hearing record.
I look forward to your testimony.
Sincerely,
Ted Weiss
Chairman
************************************
May 31, 1992
To: Diana Zuckerman, Washington, D.C.
Staff Person to Ted Weiss, Chairman
Re: Testimony for Congressional Hearing June 4, 1992 on TMJ implants
Dear Diana:
I've given a great deal of thought to our conversation earlier today.
To be quite honest, I can't compromise on my position. I was invited
to offer testimony about how TMJ implants have affected my life. I did
just that. You and I are in disagreement about priorities.
It's really unclear to me how you can be so concerned with the issues
of safety and so disinterested in matters involving protecting implant
patients from being lost in the crowd should FDA discover a problem
with a device.
You may be well-read about TMJ implant horror stories, but as far as I
know, you are not an "end stage" temporomandibular joint disease
patient. People in that position, like me, who have joint destruction
so severe that it is life threatening must face some very tough
questions. Certainly, I knew that there was limited knowledge about
Techmedica's implants. IF that isn't enough reason for me to want the
devices tracked by the manufacturer and reason enough for me to
register my implant so that IF the FDA discovers some problem with my
device, I don't know what is!
I've lost out on every attempt to improve the quality of my life so
far, and I went into that operation knowing that there were no
guarantees, as I always have. The only terrible shock was Vitek and
how it came about. I know that you blame FDA for that, but are you
suggesting Vitek is innocent? I am deeply disappointed that you and I
disagree on the issues of how important device tracking and
registration of implants is to the people who MUST HAVE joint
reconstruction with available implant materials. You said that there
is no reason to think that everything is going to be taken from the
market, but there's no proof that it won't happen either.
I don't think you have any idea how much time I spent trying to sort
through years of sheer horror in order to come up with that four
minute review for your committee. You haven't the slightest clue what
I've been through, nor has anyone except my immediate family. I KNOW
that I have reason to know what is important to me as an implant
patient. You may think you know what the priorities are, but I suspect
that you're keeping a hidden agenda. Ted Weiss
really got the ball rolling with the breast implant issue. Now that
the momentum is rolling, it is appearing to me that this "campaign" to
lynch the FDA and NIH as being totally responsible for the TMJ implant
disaster is preposterous. This matter is multfactorial and
everyone who knows anything about "TMJ" knows that. There are greedy
dentists, doctors, allied professionals, and every other charlatan in
the book with fingers in this pie. Everyone wanted on the bandwagon
and practically none knew a thing about what they were
doing. How dare you try to blame FDA and NIH for being totally
responsible for this disaster! Indeed they had a responsibility that
should have been better managed, but so did a great deal of other
players. What about Charles Homsy? Has he no responsibility? You
asked me to name DuPont, but what about Dr. Homsy? I don't believe for
a single moment that surgeons didn't suspect that something was not
right about these Vitek implants. They put the implants in, took them
out, told the patient that there was something strange about that
person's ability to heal and that they were one of a kind. The only
thing is, all of us who talked to one another know that all the
doctors told us the same phoney line.
I am asking that you accept my testimony the way I submitted it except
for some grammatical corrections and a couple of other nice ideas of
yours which I appreciate. I can not compromise my principles and I'm
asking you to appreciate that I have reasons for my
strong feelings. I have been taken advantage of all I intend to be. I
will not be anyone's puppet; least of which a puppet to a politician.
I realize this letter is strong, but I am feeling tremendous
frustration over this. You never told me my testimony would be
censored. I was invited to testify and instructed to have my prepared
statement delivered to the subcommittes no later that 10 A.M. on
Monday, tomorrow. I was told to prepare a statement that reflected how
all this has impacted me. I did that. It seems un-American that you
ask me to testify and then tell me what I can and can not say. I feel
like Big Brother is watching over me.
In closing, you might think about this: If you had all your savings
and someone told you to put it someplace without a name or address or
any other way to find it when you needed it, I would guess that you
would not think that would be a very safe investment. Well, I consider
implants in my body an investment in my life; no different than one's
life savings in a bank.
Please let me know of your decision via FAX as early as possible.
Sincerely,
Sabra Broock
******************************************
ONE HUNDRED SECOND CONGRESS
Congress of the United States
House of Representatives
Human Resources & Intergovernmental Relations Subcommittee
of the Committee on Government Operations
Rayburn House Office Building, Room B-372
Washington, DC 20513-8148
June 1, 1992
Ms. Sabra Broock
Del Mar, California 92014
Dear Ms. Broock:
Under the Rules of the House of Representatives Rule X, 2(b)(2), the
Committee on Goverment Operations has oversight responsibilities for
the U.S. Department of Health and Human Services, which have been
delegated to the Subcommittee on Human Resources and Intergovernmental
Relations. In the exercise of its oversight responsibilities, the
subcommittee has been reviewing federal research and regulatory
activities pertaining to the safety and effectiveness of TMJ implants.
I appreciate your providing written testimony for our hearing on this
topic that is scheduled for Thursday, June 4, 1992. The hearing will
focus on research and FDA regulation of a variety of temporomandibular
joint (TMJ) implants, Because of changes in the hearing schedule, and
the need for testimony focused on specific research issues, I regret
to inform you that we will not have sufficient time to receive your
oral testimony. However, your written testimony regarding your
experiences and recommendations will be very helpful to the
subcommittee in its consideration of the appropriate role of the
federal government in protecting consumers and funding essential
medical research in this area.
I thank you for your assistance, and regret any inconvenience this may
have caused. If you have any questions, please call Ann Marie Atkins
of the subcommittee staff.
Sincerely,
Ted Weiss
Chairman
**********************************
WRITTEN TESTIMONY FOR THE CONGRESSIONAL RECORD
Hearing Date: June 4, 1992 10:00 A.M.
Subcommittee on Human Resources and Intergovernmental Relations
Ted Weiss, Chairman
Mr. Chairman, Members of the Committee:
My name is Sabra Broock.
My personal story spans nearly a decade and some fifteen surgeries.
This is only the beginning of the rest of my life. There is no way out
of this for me and no way to predict the future.
It is impossible for me to adequately summarize a decade of events
hallmarked by betrayal, victimization, hope followed by
disappointment, incapacitating pain, emotional suffering, and the
worry of financial unknown all in four minutes. I climbed aboard this
merry-go-round of horrors in 1983. I was a vibrant thirty year old,
mother of two, nurse, and wife of a physician. Tragically, during a
preventative surgery designed to protect my jaw joints from wearing
out, complications occurred and I BECAME a "TMJ" patient.
My life was shattered, my health destroyed, and emotionally... I
couldn't believe what was happening to me and my family. My children
have missed out on a normal childhood. Seeing a parent suffer affects
children in ways I can't pretend to know. Each time I kissed my
children and husband goodbye before surgery, I feared I might never
see them again. The psychological preparation I've gone through
fifteen times is indescribable. After all, no one knows better than I
that surgical complications do happen, including the risk of death.
There aren't words that can convey to your minds the pain and
emotional suffering that has been my way of life for a decade. The
recovery from each surgery was so horrendous that I wished I hadn't
survived. I truly don't know how many more times I can fight for my
life.
I've experienced the failure of Silastic and Proplast. Nearly five
months ago, I had artificial joints implanted. That surgery alone cost
about $60,000.00. My care since 1983 is nearing $250,000.00! This has
been devastating to our family and our insurance plans. I
worry every day that I'll lose my insurance.
The FDA's Patient Notification Campaign started in October of 1991 and
was ignored where I live. All the reporters I contacted claimed they
didn't care what Dr. Kessler announced; it didn't have any local
impact.
Why there has been so little media interest in issues of TMJ implant
safety and effectiveness remains a mystery. There should no longer be
any respectable journalist who would suggest that the Vitek disaster,
Proplast, is not historically important to quality health care in this
great nation of ours.
Vitek was one of two manufacturers with problems serious enough to
prompt the FDA to propose device tracking regulations. Vitek's
disregard for patient safety has created at least 26,000 victims; many
don't even know yet that they are victims. No one knows where they are
or who they all are because there was no device tracking or registry
for these patients. Can we risk another Vitek disaster in our society?
We, the victims, are physically, emotionally, and in most cases
financially exhausted. I want to believe that a tragedy like this is
not likely to happen again if certain steps are taken.
I am one of the thousands of people who need some kind of jaw joint
reconstruction because of severe jaw joint destruction. If the FDA
removes all TMJ reconstruction materials from the market, it would be
the greatest tragedy of all. We do not deserve to be abandoned now.
The single most constructive thing that could come from this scandal,
would be the implementation of regulation requiring manufacturers to
track their devices. Second, and equally important is an automatic
implant registry and a symptom data bank for implant
patients.
I am living proof that patients can not rely upon doctors to notify
patients of device problems, to report symptoms, or to report device
failures. PEOPLE need to have ways to maintain control of their own
health and they deserve to know that manufacturers are
required to track their medical devices. We need this NOW, not next
year.
Thank you.
I submitted the above testimony to Chairman Weiss' office. A member of
his staff opposed my opinions regarding
1. The importance of certain materials to remain available to severely
affected individuals,
2. My opinion that a registry was critical to the peace of mind of
people with TMJ implants,
3. And that device tracking was a high priority.
I was told that I must remove the last three paragraphs of my prepared
testimony because in the opinion of the staff member, the most
important thing that could come from these hearings would be to
express the important of research. I was told that if I was willing to
be a guinea pig with inadequately researched implants I had no right
to expect anyone else to do so. This staff person told me that I was
so wrong in my opinions that it was unbelievable.
The staff person and I shared two lengthy telephone conversations. I
made my position clear that I had not been told that I was invited to
testify, provided my testimony reflected the views of the Chairman's
staff. I thought the testimony was supposed to reflect my opinions.
The staff person told me that I had not been invited to provide any
opinions or recommendations, yet I was told that I must stress that
research be done before implants were put into people.
The letter I received from Ted Weiss via FAX on May 27, 1992 stated
"The hearing will focus on research and FDA regulation of a variety of
temporomandibular joint (TMJ) implants. Your testimony regarding your
experiences will provide invaluable information to the subcommittee in
its consideration of the appropriate role of the federal government in
protecting consumers and funding essential medical research in this
area.
Chairman Weiss' staff member told me that I should not use any
technical language such as "glenoid fossa", one of the variety of TMJ
implants, because the people hearing me would have no knowledge of
what a "condyle or a glenoid fossa" would be. How on earth can those
same people hear testimony from the panel asked to present technical
information? How could the members of this subcommittee come to a
hearing of this nature without the benefit of being "educated" to the
matters at hand? If they are to determine the appropriate role of the
federal government in the area of medical issues, they certainly need
to have some idea about those medical issues in question.
I assured the same staff member that I was a "patient" not a
researcher. I felt strongly that I was not in a position to make
recommendations to the committee about research. Of course, research
is necessary, but I am not the one to comment on how it should be
funded or what constitutes proper research regarding temporomandibular
joint implant materials or devices.
I received a carefully written letter from Ted Weiss whereby I was
informed that "because of changes in hearing schedule, and the need
for testimony focussed on specific research issues, I regret to inform
you that we will not have sufficient time to receive your oral
testimony. However, your written testimony regarding your experiences
and recommendations will be very helpful to the subcommittee in its
consideration of the appropriate role of the federal government in
protecting consumers and funding essential medical research in this
area. I thank you for your assistance, and regret any inconvenience
this may have caused.
I have, indeed, been inconvenienced. My physical strength is limited
by my health condition. The task of preparing a four minute
presentation was one that took me about twenty-five hours to
accomplish. I did what I thought was asked of me. I did accuse the
staff member in this written testimony of censoring my testimony
because it was. Additionally, that staff person told me that my
testimony said nothing and that it was most disappointing to have
received testimony that was so far afield of the important issues.
Finally, I will remind this subcommittee that I was asked to provide
testimony, written and oral, about my experiences related to issues of
implant safety. I have endured a great deal of personal experience
with TMJ issues and feel that I am entitled to an opinion as to what I
believe patients expect if they are truly being protected by federal
regulation. This subcommittee must realize that the TMJ implant
problems are multifactorial. No amount of FDA regulation or NIH
research is going to stop people from being victimized by our
society's charlatans, irresponsible manufacturers, or careless
doctoring. Above all else, patients must be able to be found IF the
government learns of some failure of devices due to any reason, not
just that research has learned of specific concerns.
As an American citizen, I am profoundly disappointed in the process
that allowed for me to be invited to speak to this committee and then
to be uninvited upon the realization that I would not limit my
testimony, (hours before the deadline of June 1, 1992 for a copy of
testimony to be delivered) to specific research issues. Unless a
patient is also a scientist with research experience in this area, I
fail to see the purpose of a Patient Panel at this particular hearing,
and I dread the thought of such "uninformed" subcommittee members
rendering recommendations when they do not know the most simple of
terminology.
I am not a politician. I have offered you testimony to the best of my
ability. It has always been my understanding that this country was
founded on the principles of free speech. I believe that my original
testimony was within the guidelines of what I had been asked to do
and that because it was, in fact, limited to the four minute
requirement, it should have been heard. To think that people are
selected to testify only if they will speak to the opinion of
Congressman Weiss' staff members is frightening.
This is the end of my complete written testimony. Thank you for
accepting it into record.
Sincerely,
Sabra Broock
******************************
House of Representatives
Human Resources and Intergovernmental Relations Subcommittee of the
Committee on Government Operations
Rayburn House Office Building Room B-372
Washington, DC (redundant address clipped)
Opening Statement of The Honorable Ted Weiss at a Hearing on Jaw
Implants:
Thursday June 4, 1992
Millions of Americans suffer from a vaguely defined syndrome called
temporomandibular disorder (TMD). Every year, between 500,000 and one
million new patients seek treatment for TMD pain, dizziness, and other
symptoms. Almost 80% of the patients are women between the ages of 20
and 40.
In some cases, TMD goes away by itself. In other cases, pain
medication, physical therapy, biofeedback, and other treatments are
successful. However, if these treatments do not work, thousands of
patients choose surgery every year; and if less radical surgeries are
not effective, they are likely to get implants or bone grafts.
Most people would assume that these surgical treatments are carefully
evaluated by the Food and Drug Administration or the National
Institutes of Health. They would be wrong. The FDA has never required
that the manufacturers of the implants prove that they are safe or
effective, and the NIH has not funded research on the safety or
effectiveness of implants or grafts.
We have heard this story before. Most medical devices were not
required to be proven safe or effective until 1976, when Congress
enacted the Medical Device Amendments. That law treated devices that
were already on the market before 1976, like breast implants, more
favorably than devices that were not yet in use. And, if a
manufacturer claimed that their new device was similar to a pre-1976
device, FDA was likely to agree without asking for much evidence to
prove that was true.
That is how most jaw implants were allowed to be sold. And as a result
of that carelessness on the part of FDA, thousands of patients have
suffered terribly from implants that never should have been allowed to
be sold in the first place. Not only did the implants not work, not
only did they cause unrelenting debilitating pain, they sometimes
cause serious permanent damage that continues long after the implants
are removed.
We will hear today about one implant that apparently failed 100% of
the time, and others that failed most of the time. There is evidence
that the overwhelming majority of grafts and implants that have been
used so far will eventually fail, if they haven't already.
Not all patients have had pain and suffering because of their
implants, but it may be that most eventually will. Most frightening of
all, some of these implants are causing permanent damage to the skull,
and the patients are not even aware that they are in danger.
We will hear testimony today from women who suffer from indescribable
pain as a result of their implants. We will also hear testimony from
surgeons and other experts who will explain why this happened.
At today's hearing, we will attempt to answer the following questions:
1. Why has FDA failed to regulate TMJ implants?
2. Why has NIH failed to fund research on the safety of TMJ grafts or
implants, or to determine the best possible treatment for thousands of
TMJ patients who have been damaged by their implants?
3. Most important, are millions of patients with many different kinds
of implants put at risk while two federal health agencies pass the
buck or drop it altogether? How often does FDA fail to require
manufacturers to conduct research on their products, while NIH refuses
to fund research on those same products because they believe it is
FDA's responsibility?
*end of opening statement by Chairman Weiss*
-----------------------
Subject: Is there a hidden agenda here?
Date: 8/15/98 10:57 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081517570800.NAA24603@ladder03.news.aol.com>
This post might be considered negative by those who don't want my
words to be read. It would be considered positive to those who want
to better understand why the TMJ has become the central theme for so
much disagreement.
There are supposed to be millions of people suffering (no one has a
real statistic) from symptoms related to some kind of a jaw disorder
which is poorly understood. There are supposed to be thousands of
people who belong to a particular organization (these people are
referred to as "members" of the organization but no one is willing to
share the requirements of a member in good standing..) All but a very
few have ever supported the work of Webby &
Chang in any way that is public.
On the internet's WWW, I have read about how the US Surgeon General is
going to be studying the effects of existing TMD treatments
(paraphrased at this point) upon patients. Of particular worry to me
is why this group of people being studied just happen also to be the
members of this (unnamed) organization.
Why does that worry me? I won't take up the time of readers to
explain why, because the response requires a great many details to
support my reasoning and this is not the place for that. Suffice it
to say, that this is not right and for all I know, this "study of the
members" isn't true either. My comments are based upon what I read
and only that.
It is imperitive to the general public to learn about issues that make
care and treatment for any disease or sickness difficult... sometimes
care and treatment is worse than the disease. Sometimes risky
treatment is is a worthwhile risk people take but sometimes the
disease itself is caused by what happens based in faulty reasoning...
not to be confused with intentional faulty reasoning (fraud) ... it's
just part of the development of medical
knowledge. But improper diagnostics, improper treatment,
misdiagnosis, and failed practices are known to result in
iatroepidemics. This world has known of many.. and with the rapid
advancement of technology in modern healthcare, the potential for
iatroepidemics becomes greater and greater. People need to understand
more about what they do with their health to avoid taking too much
care of one's health. That is riskier than most people realize.
(Ben Franklin knew this long ago.)
In the case of the conditions commonly referred to as "TMJ" or "TMD"
there exists a basis to believed that much of the unfortunate
suffering is due to something called an iatroepidemic. Restated:
Iatroepidemics can happen easily ... but in order to stop these
special epidemics caused by failed medical practices, people need to
understand first that they exist. The healthcare providers caught up
in an iatroepidemic find themselves in a terrible
predicament of technology and knowledge... and the patients find
themselves caught up in the worst of errors for whom there is all too
often terrible suffering that may be irreversible and the quality of
life suffers, and tragic unnecessary deaths will happen.
I can't understand why this folder's participants would be opposed to
discussing serious matters related to these conditions. I can
understand that these things happen only when and because something is
being hidden from the public view. Something is being hidden here and
I believe I know what that "something" is... but I will not reveal
what I think I know to be the cause of all this "disruption in the
folder." Just know that I am difficult to
fool by smoke and mirrors.
When patients are subject to a "conquer and divide" strategy coming
from somewhere... people who are sick will suffer great consequence.
Patients are not required to agree on anything... nor should they be
denied the means to express their sometimes unpopular ideas... but to
use disagreement as a means to conquer and divide is a very old
strategy and it's easy to see... but it may not be easy to stop. This
is what is working for some people who are
against what it is that Webby & Chang stand for...
I am also going to post this to Usenet's newsgroups sci.med.dentistry
and alt.support.jaw-disorders where I believe there are people (lay
and professional) who need to read this and also there are those who
would want to read this. If the wisdom of the Leaders here in AOL's
PRC is to hide this statement from the public view, then the
interpretation of what is happening here and beyond only becomes
easier and easier to understand and interpret.
Issues become more clear with time only if the correct answers are
asked. (Do not underestimate why I wrote the previous sentence.)
I consider myself a Leader in the march for the truth where suffering
will be lessened. The other people who either are considered to be
Leaders or who wish to be considered as Leaders... have never been
willing to come forward on the internet to identity themselves to me.
I have asked for years... but no one would materialize in any
leadership capacity. My net-presence has been well established since
the first of 1995... three and a half years
ago... and NO OTHER LEADER on the planet has joined me on the internet
with a willingness to work together ... no one has come forward to
help with this crisis... but there have been many who have always been
here with the task of finding ways to keep my insights hidden from the
public view.
There is something seriously wrong with everything that is now history
in this folder. It mimics the history I have witnessed in many other
places. Until this stops, the patients themselves are going to end up
carrying part of the burden for having been responsible for protecting
and thereby promoting the TMJ iatroepidemic for some reasons that will
be discovered in time. The truth will triumph in the end...
Webby
------------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/15/98 1:57 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081520570200.QAA04971@ladder01.news.aol.com>
Although cyberspace prevents one from knowing exactly who
the other posters are in any given forum, from my perspective,
the odds that there is a hidden agenda, conspiracy, or any other
form of paranoid nightmare going on within this particular folder
is specious, at best. The very nature of a conspiracy is that
the conspirators in question have something to gain. With the
exception of some recent agitation around here, my sense is
that the people who post here have two very benign agendas:
1.) to get better themselves, by virtue of receiving needed emotional
support, and learning from other people's experiences,
good or bad.
2.) to help other people, if possible, to recover, by the sharing of
the success or failure of various treatment and self-help options.
To suggest otherwise strikes me as being frighteningly delusional,
and I don't think this is the proper forum for political activism,
frankly.
Have the various jaw implants over the years been an utter
disaster, and a disgrace to the medical profession? Clearly, yes.
Were they the product of a sinister conspiracy to destroy the
lives of innocents? That seems as unlikely as the notion that
AIDS was intentionally introduced into the gay community by
the CIA to eliminate as many people as possible. I think the
answer lies more in the area of FDA incompetence, lack of
research and followup in the medical/dental community, and
a consistent tendency for the powers that be to treat TMJ/D as
a marginal, minor problem. This is a terrible state of affairs,
but hardly a conspiracy, anymore than disasters like the use
of DES were. Was DES given to countless women in order
to destroy future generations? Of course not. It was a drug
which wasn't tested or researched properly, and as a result,
caused terrible health problems for millions. The government
was guilty of utter stupidity, but for a crime to take place,
there has to be criminal intent--and I just don't see it.
The truth is, I wonder about what a number of highly touted
current drugs and treatments are going to do to people long-term.
Does anyone really know if drugs like Prozac are safe if
taken for decades? Are hidden health dangers lurking in
Viagra? I mean, the fact that a drug as simple as Seldane
was recently found to cause severe cardiac complications
is pretty terrifying.
Clearly, the FDA's record is not terribly impressive in this
area, and reform is needed. But to demand that the members
of a chronic pain support board rise up and form a poltical
movement is offensive to me. As far as I'm concerned,
there is only one word for a self-proclaimed Leader....and
that word is "Dictator."
My personal position is that we allow this board to serve
in its proper capacity--as an area for support, and the
positive exchange of information. It really bothers me
to think how many genuinely suffering people may have
been scared away from here lately. I hope that they
will feel comfortable enough to return at some point,
and that this will be a refuge of kindness, support,
and healing
---------------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/15/98 2:51 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081521515900.RAA21522@ladder03.news.aol.com>
Meghannyc, you have just as much right to an opinion about why things
are as they are as anyone else. I disagree with part of what you
write, and have no reason to disagree with other points.
However, you must keep in mind that perhaps I have focussed more
attention on some of the issues than you have and for that reason, you
may not be able to fully appreciate my comments in such a brief
example of writing as we see here.
I prefer to keep an open mind about the possibilities behind so many
bizarre events played out over so many years. Otherwise, we might
overlook the truth. We cannot merely seek the truth we want. We must
seek whatever the truth is with eyes fully open.
------------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/15/98 3:02 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081522021200.SAA12684@ladder01.news.aol.com>
Perfectly said! Thank you.
-----------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/15/98 6:18 PM Pacific Daylight Time
From: PrncesTam
Message-id: <1998081601185200.VAA16265@ladder03.news.aol.com>
Hi Kathy and Everyone!
They poor people in Switzerland! I have been told that they aare
still using the implants. I too am also a Vitek patient. I have had
20 surgeries. I have the proplast in 16 joints throughout my body.
My feet, hands, fingers, elbow, knees and of course my face all swell
most everyday. I am very limited to what I can do. I have had donar
bone transplants, rib grafts, hip grafts and currently bilateral
titantium total joints. I still have pain
most everyday. I wear the fentynal 50 mcg patch for pain and roxacet
for break through pain. I am having surgery again next month. The
proplast is deterarating my facial bones and I need to have some
"built" back up.
I am also 100% disabled. It took me 18 months and two appeals to
receive my approval also. Its all a game! I do not wish this hell on
anyone but I would love to have one of those claim deterimantors come
and spend just 1 day with me, I think they would have a little more
compassion for people like ourselves. I have good days and bad days.
I'm very tired now so I will be ending my post aat this point. Please
disregard the mis-spellings, my
spelling is terriable and me being tired also just don't mix!
I wish everyone the verry best! P.S. I am having the nerves in my
neck that lead to my joints burned and severed next week. This is
suppose to last for 6-9 months. It severs the nerves and elimantes
the pain. I'm looking forward to having this done. If it owrks, you
all will be the first to know!
Good Nite :-)
::-) Tammy
----------------------
Subject: meds post
Date: 8/15/98 6:22 PM Pacific Daylight Time
From: Douvic
Message-id: <1998081601221500.VAA06865@ladder01.news.aol.com>
I've read some of the post on meds. Even the best jaw joint doc will
want to surrender the drug rx role to a doc who does nothing but
medications. This usually falls to a psychiatrist or a doc who does
pharmacology. The best dentist or oral surgeon does not have the
expertise to constantly keep a patient on effective meds for years at
a time. The combination that worked 6 weeks ago may not work this
week. I know I've been on meds for years
now and I have to change them every so often. Sometimes the blood
level ofa drug will turn toxic or the drug looses its effectiveness or
the side effects are debilitating.
Pain changes your brain and body chemistry. Pain changes your nerve
wiring also. Chronic pain changes all that plus turns normal signals
into abnormal ones and changes the postural carriage of your body.
And you can't escape pain in your head like you can pain in your back
or limbs or guts.
Don't wait for an orthodontist to give you an rx. Find a pain med M.D.
I live in a big city and have access to alot of docs. But many
excellent practioners live in small towns. In the east there are pain
centers in Fl., Ky. and several university locations. Most large
cities have an excellent network- the problem is tapping into them.
---------------------
Subject: Re: The Term TMJ
Date: 8/15/98 6:58 PM Pacific Daylight Time
From: PrncesTam
Message-id: <1998081601585900.VAA12149@ladder01.news.aol.com>
To All OF US:
Many of you know what hell I along with others go through everyday. I
have NEVER said one mean, nasty or negative thing to anyone on this
message board before tonight. However, alot of people here are new to
this board and are not familar with Webby and/or Chang. They co-wrote
a book and they come here to ruffel our feathers and then always
somehow mention their book in replys. I say to everyone do not give
them the
satisfaction of their little game. They are only here to "promote"
their book. If they get you ruffled then your going to be curious of
who and what they are all about. I say shame on you both! This is
the one and only time I will give a "heads up" on the two of them.
I've been on this board a long time and I see how they work. They
disappear for a while then suddenly pop up again. I say take you toys
and go home because I do not want to play
anymore.
::-) Tammy
----------------------
Subject: Re: TMJ/ SO PAINFUL!!!
Date: 8/15/98 7:27 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081602272800.WAA26476@ladder03.news.aol.com>
Dear Alli:
I'm wearing a plastic biteguard too, for the last 5 weeks, and my
mouthsores are just horrible. Today I got a sore throat and pain in
my ears.
I thought maybe I was getting the flu or something, and I did two
things which helped: I gargled with listerine, and then I took an
Entex LA (seems to help with sore throats and achy pains everywhere.)
They're pretty cheap ($12.00 for 30), and they keep you out of the
doctor's office (with things like colds, flu, sore throats, etc.). I
SWEAR by Entex. Um, I figured if I could get rid of the sore throat
pain, maybe that would help my ear
pain - and it did.
If you're talking about the normal "full ear" feeling and the
vice like grip on each side of your head, I must say that some folks
on the Message Board, including Dr. Wes in last Wednesday night's TMJ
Chat, has been SO helpful. They told me, essentially, to cut off my
TOES so I'd be more inclined to concentrate on my feet rather than my
ears. Little dears.
A Companion in TMJ
GILLYANNEB@aol.com
------------------------
Subject: Re: TMJ/ SO PAINFUL!!!
Date: 8/15/98 8:15 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081603150400.XAA23717@ladder01.news.aol.com>
Dear Mom:
I'm heartened to hear your advice about 1 Sudafed (a
decongestant) a day for the pain. I just recommended an Entex for ear
and sore throat pain emanating from this TMJ myraid of irritations. I
swear by Entex - it's my only staple, other than Premarin, Provera and
Blood Pressure Pills. It'll keep you out of the doctor's office (for
flu, colds, sore throats, etc.).
Cheap too - $12.00 for 30 pills - prescription.
A Companion in TMJ
GILLYANNEB@aol.com
--------------------------
Subject: Re: TMJ/ SO PAINFUL!!!
Date: 8/15/98 8:18 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081603180800.XAA24174@ladder01.news.aol.com>
Ali -
I'm sittin' here as we speak with my FIRST SORE THROAT from this
d----d TMJ. Pain in my ears from the sore throat.
What in the heck CAUSES the sore throat? Another one of the
hilarious side effects of TMJ?
I took an ENTEX (a decongestant), doused my throat with listerine
and hope it will help. One symptom leaves, another arrives. WHAT
NEXT????????????
A Companion in TMJ
GILLYANNEB@aol.com
--------------------------
Subject: Re: Hiding Posts
Date: 8/15/98 8:23 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081603230200.XAA24862@ladder01.news.aol.com>
Webby,
For all the good it did, I said "boo". I want my responses back
in my e-mail. The responses were to you and they weren't confrontive
and were very well written, in my opinion.
I don't believe in censorship of anybody's posts, including
yours, Chang's and Briarnet's.
As an alternative to removing our posts, we ALL have the right to
ignore whoever we wish to ignore.
A Companion in TMJ
GILLYANNEB@aol.com
------------------------------
Subject: Re: Hiding Posts
Date: 8/15/98 9:24 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081604244500.AAA13498@ladder03.news.aol.com>
Subject: Re: Hiding Posts
Date: Sat, Aug 15, 1998 23:23 EDT
From: GILLYANNEB
Message-id: <1998081603230200.XAA24862@ladder01.news.aol.com>
Webby,
For all the good it did, I said "boo". I want my responses back
in my e-mail. The responses were to you and they weren't confrontive
and were very well written, in my opinion.
I don't believe in censorship of anybody's posts, including
yours, Chang's and Briarnet's.
As an alternative to removing our posts, we ALL have the right to
ignore whoever we wish to ignore.
_____
Gillyanneb,
I'm sorry but I don't understand what you're asking me to put back in
your email. You sent me a cc of one of your messages which was also
posted here in the folder. Why would you ask for me to send it back
to you? Please understand that I might not have kept your email, but
I do have it if you need a copy. I will post it here, because I do
not wish to send you email from my account. I do not send email to
people I either don't know or who are
rude to me online.
So, if you want the email posted here, I will be glad to do so, but
you'll have to reply to this. Please, do not send me any email. And
if course, we are all free to disregard any or all posts here or on
the net. It's your choice and no one else's to make.
Webby
---------------------------
Subject: Re: The Term TMJ
Date: 8/15/98 9:44 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081604443900.AAA06186@ladder01.news.aol.com>
Tammy, I will reply below. I hope you'll take the time to read my
comments.
Subject: Re: The Term TMJ
Date: Sat, Aug 15, 1998 21:58 EDT
From: PrncesTam
Message-id: <1998081601585900.VAA12149@ladder01.news.aol.com>
To All OF US:
Many of you know what hell I along with others go through everyday. I
have NEVER said one mean, nasty or negative thing to anyone on this
message board before tonight. However, alot of people here are new to
this board and are not familar with Webby and/or Chang. They co-wrote
a book and they come here to ruffel our feathers and then always
somehow mention their book in replys. I say to everyone do not give
them the
satisfaction of their little game. They are only here to "promote"
their book. If they get you ruffled then your going to be curious of
who and what they are all about. I say shame on you both! This is
the one and only time I will give a "heads up" on the two of them.
I've been on this board a long time and I see how they work. They
disappear for a while then suddenly pop up again. I say take you toys
and go home because I do not want to play
anymore.
::-) Tammy
_____
Tammy, neither I nor Chang come here for the purpose of ruffling
anyone's feathers. I don't know why you've decided to see our
contributions here in that way but it's clear that this is what you
think of us. Yes, we did co-author a book which interestingly enough
is all about the problems that people encounter once they get into the
merry go round... a vicous circle... of care for conditions of the TMJ
or of TMD. I have not yet understood why the
people, such as yourself, who write about their frustrating patient
experiences in places like this or on the net in various places would
be so opposed to the idea of people writing books about our mutual
problems. Furthermore, Tammy, I don't understand why people like you
would insult other patients who have endured so much and all the while
have given a great deal of themselves to others in attempts to ease
the suffering of others. Maybe you
don't realize this about us.
I am mentioning the book, without any reference to the title, because
it is my right and privilege to mention that I co-authored a book
which is directly related to the needs of the people in their quest
for understanding the crisis they are facing. I am proud of the work
I did... and I stand by it. I don't believe you've read the book (you
don't seem to have) and I wonder how you are so sure that it is
without value to you and others. I spent at
least ten years of my life working on that book and there is an
incredible story behind the final product. And if it is your desire to
insult my efforts and those of Chang, then you will not be the first
and I'm sure you will not be the last. I remain proud of my
contribution to modern literature. Perhaps if you would someday do
the same, you would understand how this insult of yours feels. But,
authors of provocative works clearly understand the
risks they take in doing so.
This isn't a game. This is very serious work. I'm sorry that you
have trouble understanding or respecting that.
Webby
-----------------------
Subject: Re: The Term TMJ
Date: 8/15/98 10:09 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081605093500.BAA09177@ladder01.news.aol.com>
Tammy wrote in part of her previous post:
"...They are only here to "promote" their book. If they get you
ruffled then your going to be curious of who and what they are all
about. I say shame on you both! ..."
______
I should have written this in my previous post, but I didn't. On
second thought, I'm adding it now. I would like the participants of
the message board to know one more thing: The amount of interest in
the book comes mostly from dentists, doctors, researchers, university
students, and professors in dental and medical schools. For the most
part, they feel the book represents an important contribution to the
exploring the problems involved in the
subject of TMJ and also impact of the internet. By sharp contrast,
only a few people who are also patients with jaw disorders have been
willing to read this book (I did not say *buy* the book.) The
majority of patients online are in an all out campaign to destroy our
reputations and this has been going on for years now. Does this sound
familiar? Isn't this what you, Tammy, and others in this folder have
tried to do to us every single time we have
arrived with something to add to the current discussions? We don't
bring up topics... we add comments to the ones all of you are engaged
in already.
I just wanted to make it clear that the book's success has to do with
only one thing. And that one thing has NOTHING to do with money.
Enough said? I hope so.
Webby
------------------------
Subject: Re: Hiding Posts
Date: 8/15/98 10:18 PM Pacific Daylight Time
From: GILLYANNEB
Message-id: <1998081605181200.BAA20130@ladder03.news.aol.com>
You did not hide my posts, and there's nothing you need do. Thanks
for asking.
A Companion in TMJ
GILLYANNEB@aol.com
=====================
Subject: Re: The Term TMJ
Date: 8/16/98 5:44 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081612441600.IAA03624@ladder01.news.aol.com>
Has anyone ever SEEN this book? I could find no reference to it when
I searched for it.
--------------------------
Subject: Censorship of Webby & Chang
Date: 8/16/98 5:55 AM Pacific Daylight Time
From: PRCS DrWes
Message-id: <1998081612553800.IAA14405@ladder03.news.aol.com>
Snow, you, all my friends and future friends at PRC are welcome. I
know Webby and Chang very well, and I can tell everyone that they are
very passionate (and usually, correct) about their views. One of the
problems with cyber communications is that you can see each others
body language or hear the inflections in each others voice.
Webby and Chang have done a lot of good for TMJ sufferers, especially
those who've had surgery. I had them host one of my chat sessions
about 1 1/2 years ago and I may do it again.
I am dismayed that someone at PRC feels their posts should be
censored. Lord, look at all the posts and emails we all receive which
should never be allowed. Yet, when someone is exercising his or hers
first ammendment rights and they are contrary to some people, the
censorship begins.
Thanks again, Snow. I count you as one of my best cyber buddies.
Wes
PRCS DrWes
(Wesley Shankland, DDS, MS, PhD
Director, TMJ & Facial Pain Center
Columbus, Ohio)
-----------------------------
Subject: CLENCHING
Date: 8/16/98 7:28 AM Pacific Daylight Time
From: JR512
Message-id: <1998081614280600.KAA11184@ladder01.news.aol.com>
Can you please tell me what are the best drug's for clenching and does
the clenching cause headaches?????? Thanks in advace =)
Kim
------------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: Sat, Aug 15, 1998 21:18 EDT
From: PrncesTam
Message-id: <1998081601185200.VAA16265@ladder03.news.aol.com>
Hi Kathy and Everyone!
They poor people in Switzerland! I have been told that they aare
still using the implants. I too am also a Vitek patient. I have had
20 surgeries. I have the proplast in 16 joints throughout my body.
My feet, hands, fingers, elbow, knees and of course my face all swell
most everyday. I am very limited to what I can do. I have had donar
bone transplants, rib grafts, hip grafts and currently bilateral
titantium total joints. I still have pain
most everyday. I wear the fentynal 50 mcg patch for pain and roxacet
for break through pain. I am having surgery again next month. The
proplast is deterarating my facial bones and I need to have some
"built" back up.
I am also 100% disabled. It took me 18 months and two appeals to
receive my approval also. Its all a game! I do not wish this hell on
anyone but I would love to have one of those claim deterimantors come
and spend just 1 day with me, I think they would have a little more
compassion for people like ourselves. I have good days and bad days.
I'm very tired now so I will be ending my post aat this point. Please
disregard the mis-spellings, my
spelling is terriable and me being tired also just don't mix!
I wish everyone the verry best! P.S. I am having the nerves in my
neck that lead to my joints burned and severed next week. This is
suppose to last for 6-9 months. It severs the nerves and elimantes
the pain. I'm looking forward to having this done. If it owrks, you
all will be the first to know!
Good Nite :-)
::-) Tammy
------------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/16/98 8:27 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081615273900.LAA27132@ladder03.news.aol.com>
Tammy,
You wrote something below which I'd like to know more about. I hope
you'll reply.
"They poor people in Switzerland! I have been told that they aare
still using the implants. I too am also a Vitek patient."
How is it that you have this information about the people in
Switzerland? I don't understand if this is rumor or fact because I
cannot find any facts to support this information which appears every
now and then on the net.
Could you please tell us where you heard this? It would be very
useful to know who the surgeons are in Switzerland who are actually
doing this. In my opinion, I have serious doubts that this is
happening. I have serious concerns about why this rumor is being
promoted once again.
Webby
----------------------
Subject: To Webby
Date: 8/16/98 9:13 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081616132500.MAA22159@ladder01.news.aol.com>
Webby- in a previous post you said:
"The majority of patients online are in an all out campaign to destroy
our reputations and this has been going on for years now. Does this
sound familiar? Isn't this what you, Tammy, and others in this folder
have tried to do to us every single time we have
arrived with something to add to the current discussions? We don't
bring up topics... we add comments to the ones all of you are engaged
in already."
____________
Well, I have to throw my two cents in here again too! Gosh dang it
Webby! No one is questioning the integrity or content of your
messages. Not really! Its more about the way you are presenting
them. If you insult people they aren't going to take to that kindly.
What you are seeing is a reaction to the TONE of your messages! And
Tammy! For Petes sake, she is in so much pain sometimes, she can
hardly finish her messages never mind
singlehandedly ruin someones reputation. You of all people should
know what she is going through. You seem to have a lot in common with
Tammy. Can't you give her something solid to hang on to? Some kind of
hope?
If it is your intent to protect and inform as you have said so many
times in the past, show the people here a little respect and
compassion, and I would imagine it would be returned to you in kind.
And, I might add, I am very concerned about the people who are leaving
this forum because of all the fracus. What happens to them? What
happens when they keep that appointment at the oral surgeons and don't
know the "right" questions to ask because they have "lost" the
education that is found here. Shouldn't this be a concern of all of
us? Webby and Ch ang you have a responsibility here also. I know you
are more involved with the "big" TMD
issues, but a lot of us here are just trying to get through the day
and making decisions about which pain killer to use or what type of
splint works best. Can't you find a better way to show us the big
overall picture which is so important to our future regarding TMD?
God, I hope so. For all our sakes.
Regards,
Snow <who is clenching as she writes) :-(
---------------------------
Subject: TO Gilly
Date: 8/16/98 10:43 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081617434800.NAA03558@ladder01.news.aol.com>
Hi Gilly!
In response to your previous post of:
" If you're talking about the normal "full ear" feeling and the vice
like grip on each side of your head, I must say that some folks on the
Message Board, including Dr. Wes in last Wednesday night's TMJ Chat,
has been SO helpful. They told me, essentially, to cut off my TOES so
I'd be more inclined to concentrate on my feet rather than my ears.
Little dears."
___________________
LOL Please don't lose that marvelous sense of humor you have! It
helps brighten my day!
Snow
--------------------------
Subject: Depression and TMJ/TMD
Date: 8/16/98 12:03 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619034700.PAA13802@ladder01.news.aol.com>
How common for the treating clinician is it to discover depressive
symptoms associated with symptoms of temporomandibular
joint pain and dysfunction syndrome??
Subject: Orthognathic procedures to prevent TMJ/TMD
Date: 8/16/98 12:03 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619031800.PAA23682@ladder03.news.aol.com>
Is orthognathic surgery still being used to prevent TMJ/TMD from
occuring?
What have the surgeons learned from doing these procedures to prevent
TMJ/TMD???
Subject: TMJ or TMD and the Chiropractors
Date: 8/16/98 12:02 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619024400.PAA13691@ladder01.news.aol.com>
How many of you TMJ patients have been to the chiro? How much did you
spend on that care? Do dentists refer TMJ patients to Chiros on a
regular basis? Who benefits from this trist?
Subject: Abandonment and TMJ patients
Date: 8/16/98 12:02 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619021500.PAA13629@ladder01.news.aol.com>
How many of you surgical patients were abandoned by your surgeons? How
long did it take you to find someone to care for you and at what
price?
Subject: How many *real* TMJ patients are there?
Date: 8/16/98 12:01 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619013800.PAA23490@ladder03.news.aol.com>
Its been stated by many different federal agencies as well as many
different healthcare professionals that somewhere between 1 and 30+%
of our USA population are suffering from conditions affecting the
temporomandibular joint(s). But how many "real" patients are there?
Subject: Arthrograms and the TMJ
Date: 8/16/98 12:01 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619010700.PAA23441@ladder03.news.aol.com>
How beneficial to the patient is the cinearthrogram? Does the
exposure to high doses of radiation during the flouroscopy outweigh
the risk? How much do they cost? How many should you be subjected to
in a lifetime? Are they considered therapuetic as well as diagnostic?
Subject: Surviving and TMJ
Date: 8/16/98 12:00 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619004100.PAA13438@ladder01.news.aol.com>
How many people suffered damages so bad that they had to learn how to
speak, swallow, and eat all over again in order to learn to live with
their disabling conditions?
Subject: TMD/TMJ and Insurance carriers
Date: 8/16/98 12:00 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619001400.PAA23322@ladder03.news.aol.com>
How much will an insurance carrier spend to defend against a
malpractice case taken out against their insured? $10,000 - $100,000 -
$200,000 more? less? Will they outspend the plaintiffs? Will they
outlast the plaintiffs??? What else might they do? Destroy and alter
records? Buy the jury? Kill the plaintiff???
Subject: Ten points to consider when posting here
Date: 8/16/98 11:59 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618594700.OAA23275@ladder03.news.aol.com>
When asking anyone for comments or suggestions about your situation,
you might want to consider referring to these ten points when putting
your information together.
Try to include information about the following:
(1) Age, gender, and general health of the person with the trouble.
Previous "TMJ" treatment?
(2) From what country do you write?
(3) What specific, if any, diagnosis has been made about the TMJ?
("TMJ" is not a diagnosis!)
(4) When mentioning x-rays, tell what was imaged, which type of
imaging study, and when.
(5) Has there been any kind of known trauma associated with the onset
of symptoms?
(6) When describing pain:
What kind of pain? How does if feel? Where? When did pain
begin and how long does it last?
Dull ache - where?
Sharp-stabbing - where?
Shooting - from where to where?
Other?
How does this pain impact the person's life? (How often is pain a
problem?
Minimally. Daily activities continue, sleep is generally the same.
Moderately. Daily activites are often interupted.
Work absence - how often? (At business or at home.)
Compromised nutrition? To what extent?
Medication related problems.
Severely. Quality of life is severely impacted.
Unable to work at business or at home. (Requires help to care for self
and family.)
Unsuccessful prescribed pain mangagement.
Intractable pain.
(7) Has the problem affected family planning needs? Pregnancy delayed
or terminated due to:
Drug therapy?
Inadequate nutrition?
Planned general anesthesia (diagnostic or therapeutic).
How often?
Intractible pain?
Other health problems due to jaw condition?
Family financial instability due to medical costs?
Family financial instability due to loss of employment?
Other relationship difficulties due to chronic health problem of any
family member?
(8) In what ways, if any, has this person's health become a serious
problem to the family unit?
(9) What does the patient know about the temporomandibular joint and
its related conditions?
(10) What does the writer know about these conditions? How has this
information been learned?
Subject: How old to get TMJ or TMD?
Date: 8/16/98 11:56 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618564700.OAA22938@ladder03.news.aol.com>
Is this a condition that affects our youth? What do young people have
to look forward to by being diagnosed with TMJ or TMD? What would you
do if it happened that your teenager was diagnosed with TMJ? What
would you do if the dentist said your child needed surgery on the TMJ?
Would you wonder about what you were doing to the quality of your
child's life or would you just go ahead and tell the doc to do
whatever he/she thinks and that's that?
Does any of what is being posted to this group change the way you
might have answered the same question yesterday? Would you put your
child's future on the line the way it appears people do for themselves
in this group?
What do we owe the children of this country... and other countries
that might act like this one toward TMJ/TMD?
Subject: Articular eminence in the temporomandibular joint
Date: 8/16/98 11:55 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618551300.OAA22743@ladder03.news.aol.com>
Is the steepness of the articular eminence in the temporomandibular
joint with a tomographic comparison any different than those with
normal disk position and patients with disk displacement???
Subject: Disability and TMJ/TMD
Date: 8/16/98 11:51 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618515900.OAA12390@ladder01.news.aol.com>
There has been considerable talk about disability involving the
temporomandibular joints. My question is who is really making the
money off the suffering of those who are disabled by conditions
affecting their TMJ's? It certainly isn't the disabled, but there are
sure plenty of people in between who make their livings off of this.
Subject: TMJ/TMD screening
Date: 8/16/98 11:51 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618512300.OAA12312@ladder01.news.aol.com>
How many of you in here believe that TMD/TMJ screening should be
provided to all patients who walk into a dental office? Why should
that be done, if you think it should be done? Why do you think it
should not be done, if you think it should not be done?
Subject: Radiation exposure and TMD's
Date: 8/16/98 11:48 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618485700.OAA11997@ladder01.news.aol.com>
How many radiographs should a potential TMJ/TMD patient be subjected
to in the effort to determine the correct diagnosis? How much
radiation exposure can a person expect as reasonable in the normal
course of diagnosis?
How much radiation exposure can a person expect as reasonable if the
risks of treatment cause the worst of complications.
Subject: Medical work-up prior to TMJ surgery
Date: 8/16/98 11:48 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618481900.OAA21894@ladder03.news.aol.com>
How about the work-up prior to surgery: various radiology studies,
radiologist's fees, psychological consultations, nutritional
consultations, the neurologist's consultation, the medical doctor's
pre-op history and physical ... I could go on, but.... what would be
the purpose? None of the members in this group seem to care about all
of the serious issues.
Subject: Autologous Bone Grafts and the temporomandibular joints
Date: 8/16/98 11:47 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081618474500.OAA11845@ladder01.news.aol.com>
How many surgeons in the USA are qualified to do this procedure?
------------------------------------
Subject: Re: Censorship of Webby & Chang
Date: 8/16/98 12:13 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619132400.PAA14973@ladder01.news.aol.com>
Thank you Wes.
Best wishes,
Bruce
----------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 12:44 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081619440100.PAA18921@ladder01.news.aol.com>
>>No-one, let me repeat so even you can understand, NO-ONE is demanding<<
>>anyone to form a politcal group. You sound like you belong to the Terrie Cowley<<
>>gang to me though.<<
So even I can understand?? Oh, wait, I forgot--you never say anything
hostile or unpleasant on this board.
I have no idea who Terrie Cowley is, nor do I, frankly, care. I am
simply a
person who was completely disabled by the actions of an incompetent
dentist, and I am now just trying to figure out a way to lead some
semblance
of a normal life.
As far as I can tell, you have a serious antisocial disorder, in
addition to
whatever temporomandibular problems you may or may not have. I
suggest you consider intensive psychotherapy.
Once again, I am going to be forced to ask AOL to step in here. These
sorts of posts are terribly destructive, and should not be permitted.
----------------------
Subject: Re: The Term TMJ
Date: 8/16/98 12:50 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081619504300.PAA19815@ladder01.news.aol.com>
You wrote:
"They co-wrote a book and they come here to ruffel our feathers and
then always somehow mention their book in replys."
If you think thats what it's all about it's no wonder you're in the
mess you are in.
Tell me something, how did "they" (the docs I suppose) determine you
had proplast in all those joints? EXACTLY what did they do to
determine this?????
Chang
---------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 12:52 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081619525900.PAA00232@ladder03.news.aol.com>
>>No-one, let me repeat so even you can understand, NO-ONE is demanding anyone to >>form a politcal group. You sound like you belong to the Terrie Cowley gang to me though.
>>Chang, and thats Mr. Chang to you PRC Staffers. What a joke!
Also--not that I would understand these things--but are you aware,
Chang,
that you made at least four grammatical and/or punctuation errors in
your brief diatribe?
Perhaps you ought to check these things more carefully, before
impugning
the intelligence of others, hmmm?
------------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 1:00 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620004700.QAA01292@ladder03.news.aol.com>
You wrote:
">>Chang, and thats Mr. Chang to you PRC Staffers. What a joke!
Also--not that I would understand these things--but are you aware,
Chang,
that you made at least four grammatical and/or punctuation errors in
your brief diatribe?
Perhaps you ought to check these things more carefully, before
impugning
the intelligence of others, hmmm?"
Thats nice.
Did you ever stop to think that maybe, just maybe, English is not my
preferred language? So it's ok for you to cap on my english and at
the very same time try and employ more censorship against me? What a
joke.
Chang
-----------------------
Subject: Vitek TMJ Products
Date: 8/16/98 1:07 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620075500.QAA22122@ladder01.news.aol.com>
Update on Vitek and TMJ Products
Current as of October 1994
Background
In October 1991, the Center for Devices and Radiological Health
(CDRH) of the FDA iniatiated a notification program to identify and
locate patients with Vitek temporomandibular interpositional (TMJ/IPI)
implants. The program was intended to alert patients of the
possibility of implant failure that may cause serious health problems,
and to urge them to see their doctors or oral surgeons for examination
and medical advice.
The FDA developed a media campaign, consisting of a video news
release (VNR) and press announcements, along with articles that were
sent to professional and consumer organizations and journals. Members
of the American Association of Oral and Maxillofacial Surgeons (AAOMS)
were asked in letters both from the FDA and from their association to
identify and notify patients with Vitek implants. Doctors and
hospitals who purchased Vitek TMJ Products were also asked to inform
patients of problems with the devices.
At the request of the FDA, Medic Alert International Implant
Registry established an 800 number and registry for Vitek TMJ
patients. Medic Alert Foundation is no longer able to maintain the
International Implant Registry (IIR) and so is closing this branch of
the Foundation. Patients who are enrolled in the registry will be
maintained until their enrollment is subject to renewal. At that time,
the patients will be informed that the IIR has closed. The names of
patients who joined the registry will be kept in a database but no
attempt will be made to update the records of those patients.
Meanwhile, Medic Alert is seeking another provider for this service,
but has been unsuccessful so far.
FDA is aware of the need to continue to provide information to
TMJ patients and will provide information to the Resource
Organizations listed at the back of this update. FDA suggests that TMJ
patients contact one of the Resource Organizations to determine how
you might avail yourself of information and the network opportunity
they provide.
Subject: Silastic TMJ devices
Date: 8/16/98 1:07 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620072100.QAA02163@ladder03.news.aol.com>
Concerning Silastic
The FDA is receiving an increasing number of reports from
patients of device failure and problems with Silastic TMJ implants.
The following may answer some questions about Silastic.
How did Silastic get on the market?
Silastic sheeting was on the market prior to 1976 when FDA
received authority to regulate medical devices and thus was
"grandfathered" under the law
What is the problem with Silastic?
Reports indicate that the silastic is breaking apart.
What problems and symptoms are patients reporting with Silastic?
Patients have reported the following problems:
necrosis (localized death of living tissue);
chronic pain;
various blood disorders;
foreign body reaction and immune inflammatory response;
bone and tissue deterioration;
tissue granulation (tissue made up of blood bearing cells which
form grainy like projections on the surface of a healing wound, ulcer
or inflamed tissue surface);
facial numbness; and/or
breaking of the device.
What should patients with Silastic implants do if they are having
problems?
Patients should make an appointment with their oral surgeons for
an immediate evaluation which may include an MRI, or CT scan if the
device contains metal. There is the possibility that the implant may
have to be removed.
If patients are not experiencing problems, should they do anything?
Even if the patients are not experiencing problems, they should
consult with their oral surgeons. Because these devices are intended
for short term use only, close monitoring is essential due to the
potential for implant disintegration over longer periods of time.
Will all patients have problems with their Silastic implants?
At this time, we do not have the answer, as it is specific to
each patient and the following factors: lenght of time an implant is
in place; the anatomical configuration of the patient's joint; and how
force is applied in the jaw area.
Is there a connection between the kind of silicone used in jaw
implants and connective tissue diseases and immune-related disorders?
There has been some concern that silicone gel of the type used in
breast implants may migrate through the body and be connected with
certain conditions such as connective tissue diseases and
immune-related disorders. Silicone gel was not used in jaw implants.
Furthermore, migration of the hard type of silicone used in jaw
implants appears to be less likely than with the gel. Scientific
knowledge is incomplete concerning all of the potential health
consequences associated with implant failure.
Are Dow Corning silastic implants still on the market?
No, Dow Corning has discontinued the marketing of H.P. sheeting,
Silastic Temporomandibular Joint (TMJ) implants, and Medical Grade
Sheeting and Block material.
---------------------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 1:08 PM Pacific Daylight Time
From: PattyDFX1
Message-id: <1998081620081300.QAA22166@ladder01.news.aol.com>
Chang...
Do you honestly think that each and every person on this board is so
stupid that they have not pondered any and all of these questions in
your 32 (THIRTY-TWO) posts? For that matter, all people in chronic
pain live with these questions, decisions, and sorrows & joys over
decisions past. How dare you think you are the only one with a mind
big enough to encompass all these questions and theories. We are here
to give advice and
support based on our own experience. Not one of us claims to be an
expert in anything other than pain. I was very nicely reading thru
your posts and once again pondering some of your questions, when all
of a sudden, I come to one of your usual attacks. Don't you understand
that there is NO conspiracy here? That we all just like to be treated
with respect and as if our opinions counted as equally as yours do?
This board and all the rest in PRC are
about love and support, not hatred and attacks. I would be glad to
hear your opinions, if only you could keep your verbal abuse out of
this folder. Yes, this folder is open to all who chose to enter.
However, if you do not like this place, it is also your choice to
leave. Please do not hurt anymore of us. If you genuinely want to
share your opinions and open up a good discussion, then please do.
But, if you just want to "force" us to listen (and
believe me, we've heard it all before...you did not invent these
questions), then please, I would hope you can find a group more to
your liking.
Be Well...
Patty
------------------------
Subject: TMJ Orphan Devices
Date: 8/16/98 1:10 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620103100.QAA02578@ladder03.news.aol.com>
There is so much discussion in this group about TMD being common.
People are easily convinced that they must have "TMJ" or "TMD" after
reading an article describing various aches and pains in the area of
the jaw.
It may be true that myofascial pain is a relatively common finding if
you look for it.
If you look for the patient population with or in desparate need of
total TM joint replacements you will be hard pressed to find them.
This type of degenerative joint disease is very rare and has put
patients into a classification of needing an orphan device.
For the few patients there are, there would be far fewer if not for
the devastating disaster of alloplastic implant failures which
certainly contributed in a very big way to the tragedy of this Rare
Disorder. Degenerative Joint Disease of the TMJ secondary to
alloplastic implant materials has happened. There are lessons to be
learned from this.
As much as I wish this group would (could)participate in discussing
what should be done to help the people caught up in this disaster, I
am more and more certain every day that the large majority of readers
and contributors of this newsgroup do not even know that such a
disaster ever happened or that such a condition is one of those TM
Disorders that everyone seems to have.
If you need a new hip... no problem. A new knee? No problem.
Consider that athletes get new hips and knees so that they can go out
and do what they do again without any fear that there aren't any more
where those came from. People who need new temporomandibular joints
do not have any peace of mind. If you need one, there isn't one that
has been proven as safe or effective in the eyes of the FDA and it
remains a possibility that nothing will be approved for many, many
years.
Subject: PMD's and the $$$ to be made
Date: 8/16/98 1:10 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620100000.QAA22413@ladder01.news.aol.com>
What do we know about the history of continuous passive motion devices
in the US? Let's start with the newest item. If you watched the news
last night, you may have seen the national coverage these people got
for their contribution to TMJ problems. Are they contributing to the
problems, the solutions, or both? The answer must be: both.
The big question is, who is going to be contributing to the $47
million in five years? I will post all I can find on the internet
about this device. Also, let us not forget that there are other
companies who have and are offering these solutions for TMJ and even
GOOD OLD VITEK had a part (A BIG PART). Don't worry, Vitek's
contribution will not be overlooked. I'm just going to start with
this:
****
Audubon Update: December 1995, Vol.1, No.1
Audubon Welcomes First Tenants
Fluid Motion Technologies
Two Columbia professors have started a company, Fluid Motion
Technologies, to manufacture and market a device they developed to
relieve temporomandibular joint (TMJ) problems. Drs. Howard
A. Israel and Steven Syrop, professors at the School of Dental and
Oral Surgery, have invented and patented a jaw exercise device called
E-Z FlexοΏ½, which consists of a small hand-held pump
connected to a mouthpiece that contains a bellows and fits gently
between a patient's upper and lower jaws. The company projects gross
sales to reach $47 million in five years.
Subject: FDA PMA's for medical devices
Date: 8/16/98 1:08 PM Pacific Daylight Time
From: Br00770
Message-id: <1998081620082900.QAA22199@ladder01.news.aol.com>
How may a device be cleared for marketing?
If a manufacturer intends to make a device available to patients,
the device must be cleared by the FDA prior to distribution by
submitting to the FDA a Premarket notification 510(k) or a Premarket
Application (PMA).
510 (k)
Manufacturers intending to market a device for the first time, a
significantly modified device including a device with a new or changed
indication for use, are required to notify the FDA through a premarket
notification 510(k) submission regarding substantial equivalence (SE)
to a device legally marketed in the U.S. prior to May 28, 1976 or a
reclassified device from class III to II or I.
PMA
A manufacturer may also market a class III device by providing
preclinical and clinical safety and efficacy data through a PMA
application. The PMA requirements apply to post-amendment devices
(marketed after May 28, 1976) and those which have been classified
into class III. These devices are generally implantable, life
sustaining, life supporting, or those presenting potential
unreasonable risk of illness or injury. FDA and a panel of experts
have proposed that TMJ implants be classified as class III devices.
IDE
A manufacturer may file an IDE application to the FDA requesting
that the firm be allowed to perform research on a device in accordance
with approved study protocols involving the use of human subjects, to
collect data towards developing safety and effectiveness data for that
device. IDE applicants for TMJ implants must submit information to FDA
to demonstrate that the research will be supervised properly, and that
certain records and reports will be maintained and properly reported
to FDA. Once research is concluded, the manufacturer must submit
either a 510(k) or a PMA in order to obtain marketing clearance.
What is being done to make it easier for patients who will be
receiving implants in the future to be notified of device problems?
FDA's Device Tracking Regulation became effective on August 29,
1993. The regulation requires manufacturers, distributors, and
hospitals to establish systems to track those medical devices that are
subject to regulation, including jaw implants.
How can problems with medical devices be reported?
To report a problem with a medical device, call 1-800-FDA-1088 to
obtain a MedWatch reporting form. FDA encourages you to have your
doctor complete the reporting form.
If patients cannot find a surgeon who will accept them for treatment,
what recourse do patients have?
Patients can contact the dental school at a university or can
call their state dental association.
What can patients do if their surgeon dismisses their complaint or
will no longer treat the patient?
Patients can write their state dental association or the
professional organization of oral and maxillofacial surgeons, AAOMS,
explaining the circumstances.
The address for AAOMS is:
American Association for Oral and Maxillofacial Surgeons
9700 West Bryn Mawr Avenue
Rosemont, Illinois 60018-5701
What questions should patients consider asking when discussing TMJ
surgery with the surgeon?
Patients should discuss with the oral surgeons the risks and
benefits before implanting any device. Presently there are two TMJ
implants on the market, the Morgan and Christensen which were on the
market before 1976 prior to the enactment of the medical device law in
1976 and thus are exempt from premarket notification. The FDA does not
have safety and effectiveness data on either of these TMJ devices.
Some questions patients may want to ask include:
1. How long has this device been on the market?
2. Do you have the name, manufacturer, model number and lot number
of the device?
3. Does the labeling on the device indicate that this is a
temporary or permanent implant?
4. If temporary, how long is the implant intended to remain
functional?
5. What are the possible complications of having the device
implanted?
6. What are the advantages of having the device implanted?
7. Are there alternatives to surgery? what are they?
8. What are the advantages and disadvantages to the alternatives?
9. Given my condition, am I a candidate for alternative therapies?
----------------------------------
Subject: Re: Dental care and TMJ/TMD
Date: 8/16/98 1:31 PM Pacific Daylight Time
From: SweetieLF
Message-id: <1998081620313100.QAA05237@ladder03.news.aol.com>
Very carefully!!! :)
I actually postpone my visits to the regular dentist when I am in
flareup or feel that I wont be able to open my mouth wide enough to
get cleaning done.....you have to work around it all......SweetieLF
-----------------
Subject: Re: Surviving and TMJ
Date: 8/16/98 1:39 PM Pacific Daylight Time
From: SweetieLF
Message-id: <1998081620394500.QAA06241@ladder03.news.aol.com>
I had and still am trying to relearn speaking, eating, swallowing, and
functioning in general from my orthognathic surgery due to TMJ and
bite problems...it is frustrating, embarressing, painful, and it is
very hard work. I want to give up many times but I will press on
despite all the pain and setbacks becasue i will get better soon I
know it. It is like hell this TMJ, but I know that God is in control
and he is holding me in palm of
his hand:)
SweetieLF
---------------------------
Subject: Re: Depression and TMJ/TMD
Date: 8/16/98 1:41 PM Pacific Daylight Time
From: SweetieLF
Message-id: <1998081620410500.QAA26304@ladder01.news.aol.com>
Depression and TMJ go HAND IN HAND ALWAYS......that's all I have to
say.....Laura
------------------------
Subject: upset about webby & chang?
Date: 8/16/98 3:23 PM Pacific Daylight Time
From: VJHl
Message-id: <1998081622232100.SAA19850@ladder03.news.aol.com>
Do what I do. Don't read their post when you see their names and do
not respond to them. When you accidentally click on one of their post
under another name click off it before it junks up your brain. Ignore
them.
-----------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 3:36 PM Pacific Daylight Time
From: Milocat4
Message-id: <1998081622360900.SAA21542@ladder03.news.aol.com>
Chang,
Is it really necessary or polite for you to post 28 messages in a row?
Although there is no limit on the number of posts of different
subjects, this really does not come across as wanting to communicate
in an atmosphere of caring and support. In my experience over the
years in business and in dealing with groups of people, the most
effective way to communicate is to provide concise, intelligent points
and questions, a couple at a time in order to
hold the interest of the audience. What you have done by posting so
many questions at one time is guarantee that most people in this
folder will simply keep clicking to "next subject". If you want
people to listen to you, try using better public relation techniques.
Pat
(aka Milocat4)
-----------------------]
Subject: This great book
Date: 8/16/98 3:46 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081622465100.SAA22957@ladder03.news.aol.com>
So?...has anyone really laid eyes on this great book that Chang and
webby supposidy wrote??
----------------------
Subject: Zostrix/Capsaicin
Date: 8/16/98 3:51 PM Pacific Daylight Time
From: SweetieLF
Message-id: <1998081622515400.SAA13635@ladder01.news.aol.com>
I just started using Capsaicin potency .075% today and I had to wash
it off cause it burned so bad I coudn't stand it. I wanted to tough
it out until I got some benefits from it and the burning stopped, but
I couldnt' take it. I have sensitive skin and with the TMJ it is just
worse, maybe that is why it burns so bad? Should I keep it on and
just suffer for a few days till it wears off and helps with pain? I
put it on my joints and
chewing muscles, but might want to try it on my neck too. Thanks for
the help everyone:)
Laura
-----------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 5:52 PM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081700523200.UAA29578@ladder01.news.aol.com>
>>>You're all just selling drugs for the pharmaceutical companies, I know it,<<<
>>>you know it, Webby knows it, and the pharmaceutical companies know <<<
>>>it too, and thats all there is to it.<<<
For the most part, I've noticed that two deadly substances have been
mentioned
here a lot lately: ibuprofen (it frightens me even to type the name),
and....ginger.
Well, finally, The Truth has come out (hey, isn't X-Files on
tonight??), and I
confess to a certain feeling of relief. No longer must we stay
hidden. We
all--yes, all of us, Chang--are members of an evil, highly ambitious
ginger
growing consortium in Hawaii. We live together on a rambling farm in
a
remote, unpopulated mountainous area. (I'm sure you understand why I
can't be any more specific than that; we are, after all, a Cult, and
have
many security considerations.) Currently, HeyMom1 is our putative
Leader, although I will now admit that she and I are engaged in a
vicious,
behind-the-scenes power struggle. You see, I have developed a
particularly potent new strain of ginger with extra flavor, and under
the
cover of darkness, I sneak out to our many acres of ginger fields, and
sow tiny seedlings in and among the regular crop. When they sprout,
and our members taste my ginger--and experience its powerful
physical effects, I feel that then I, and I alone, will be Our True
Leader.
Watch out, Canada Dry! Go away, Schweppes! And--more to the
point--be aware, TMJ/D patients all over the world! We will allow
nothing, and no one, to stop us in our quest to make a tasty ale,
some lovely teas, and reduce pain and inflammation everywhere.
Thank you, Chang, for finally exposing us. The heavy burden of
our secret has been weighing heavily upon me. Although the
Cult may expel me for sharing our secrets, I will sleep better
tonight than I have in a very long time.
Our slogan: Ginger Growers, Unite! By the way, we publish a
lovely newsletter, for those who wish to subscribe.....
---------------------
Subject: Re: TMJ or TMD and the Chiropractors
Date: 8/16/98 6:36 PM Pacific Daylight Time
From: JGantt1974
Message-id: <1998081701362900.VAA06221@ladder01.news.aol.com>
I was sent to physical therapy last year and to a chiropractor this
year per my request. I've seen the chiropractor for about 10-12 weeks.
He and I discussed some of my symptoms and decided it might be TMJ. I
don't feel as if I've had a definite dx.
--------------------
Subject: Stretches and exercises to relieve TMJ, neck and shoulder
pain
Date: 8/16/98 6:45 PM Pacific Daylight Time
From: JGantt1974
Message-id: <1998081701453000.VAA07641@ladder01.news.aol.com>
I've been told to do stretches and various exercises to strengthen my
neck and shoulders whick ache all the time. This soreness goes from my
left clavicle to the jaw joint by my ear on the left side. My dentist
has me wearing a night guard. Please let me know of anything that has
helped you if you have some of these problems. Thank you.,
---------------------
Subject: Re: Obtaining SSDisability for TMJ
Date: 8/16/98 6:55 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081701553800.VAA19229@ladder03.news.aol.com>
I don't know if they allow disability in FL or TX yet I lived in both.
I'm currently in FL. I know in OH or TX disability was mentioned to
me yet I just kept working somehow at those dead-end jobs. I guess
I'm afraid of the stigma associated with it all. My dentist in TX was
going to send me to Baylor in Houston because all his splints, laser
trials, medications galore couldn't help me. Might want to check into
what they have to
offer. Let me know what part of FL you are in if indeed you do move
here. Be prepared for jobs that pay nothing though!
Yet, the cost of treatment is the same??? Best of luck!
-----------------------
Subject: Re: This great book
Date: 8/16/98 6:57 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081701571200.VAA19474@ladder03.news.aol.com>
So........You still don't prove it's a real book. So which is it,
Iatroepidemic or iatroepidemic ? You spell it 2 ways. What do those
words mean? Who is the publisher of this book? What year was it
published? Why can't I find any reference to it searching Library of
Congress or Books in Print?
----------------------
Subject: Re: Medications
Date: 8/16/98 6:58 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081701584500.VAA19691@ladder03.news.aol.com>
Just a possibility to consider, possibly!
Melatonin should not be used by people until middle age due to its
interferance with the body's natural production of it - I've read that
several places - so you might want to research. I threw my bottle
away, yet this was a few years ago and something may have proven that
theory invalid... Best of luck, either way!
---------------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 6:59 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081701595400.VAA19903@ladder03.news.aol.com>
Meghan! I couldn't add one more thing- you've said it all! You're
great!
-----------------------
Subject: Re: to- realitytx
Date: 8/16/98 7:00 PM Pacific Daylight Time
From: RealityTx
Message-id: <1998081702000300.WAA19942@ladder03.news.aol.com>
thanks snow...the pain is daily, nausea, etc...seems things just get
worse...political, medical, etc..
dancing in waves of pain,
Steven
-----------------
Subject: Re: Is there a hidden agenda here?
Date: 8/16/98 7:12 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081702122400.WAA21885@ladder03.news.aol.com>
You're too powerful for me, Meghan, Your wit and your mighty,
saber-sharp intellect overwhelm me. I will glad step down from the
leader of the GG's and honor you as our true leader. I vow to support
you, and help lead our other members to our cause -Victory for the
sane!
--------------------
Subject: Re: TMJ vs "myofacial syndrome"
Date: 8/16/98 7:19 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081702193000.WAA23007@ladder03.news.aol.com>
Just some possibly helpful info. I didn't obtain any relief from the
ear fullness, dizziness, and noises until I had the nerve block done.
With that INTENSE pain gone I am now noticing that the ringing... gets
worse if I try to chew something vs. soft diet... So I think possibly
the extent to which I use my jaw and move... has an influence over
some of the other symptoms.
I know I had no free periods long enough to notice from all this stuff
until the nerve block though. I also still have the blurred vision
and dizziness and pain... yet that INTENSE pain is gone. So possibly,
movement... excaserbates the other things. Yes, I still walk into
walls...
Oh, if only I was as drunk as I sometimes must look - maybe the pain
would be more tolerable!
-----------------------
Subject: Re: This great book
Date: 8/16/98 7:33 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081702334700.WAA25414@ladder03.news.aol.com>
Again - who is the puplisher and what year was it published?
---------------------
Subject: Re: TMJ or TMD and the Chiropractors
Date: 8/16/98 8:23 PM Pacific Daylight Time
From: Windey
Message-id: <1998081703233700.XAA03673@ladder03.news.aol.com>
I've had great relief from chiropractors who specialize in cranial
area, and also Dr. of Osteopath.
-----------------------
Subject: Re: Jaw popping/ TMJ Specialists
Date: 8/16/98 8:31 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081703314400.XAA24736@ladder01.news.aol.com>
_____________________
The statement to "THINK, People, THINK" came across to me as being
very rude. One of the difficulties communicating via e-mail is that
sometimes it is hard to read a statement due to the different
possibilities of its meaning. That could have been a demeaning or
belittling statement or a challenge? Perhaps we could all attempt to
be a little clearer and to write messages in such a manner that
someone new to the board would not be dismayed or
offended.
We do all need to participate in ending the politics of tmj/tmd. Yet,
lets share our information and remember that we all have similiar
goals in mind and the subject listed could separate the politics,
insurance issues, and treatment issues... My dentist (practicing in
OH and NY) gave me journal articles in the 1980's with titles like:
How to recession proof your dental practice with TMJ, or TMJ and the
solid gold placebo (splints). So none of
the issues are brand new.
It is time we do demand our rights as patients, insured parties, and
human beings, yet, lets all work together and if someone does not wish
to be proactive then that, as it always has been, is there choice. I
am not sure what is going on with these boards lately as I am reading
these posts after being away for a few weeks. I do sense that maybe
new people may not feel very welcome or that this board is more stress
in an already stressful situation.
I would love any info on becoming part of the solution to the politics
of TMJ/TMD yet please realize that with the pain I am in, just making
it on a day to day basis is a lot. So, I may not be aware of
everything going on and would just like the info in a polite,
friendly, cooperative manner so I can be part of the action when I am
able, if I choose. I sure do not want any future generations to go
through this stuff. We all have different
circumstances to deal with and therefore lets just get the information
out and be a supportive network. I have never had those implants,
fortunately for me, my Dr.s were against them. Yet, I have had 4
surgeries and dermis implants, PT, MT, Chiropractic work, injections,
splints, and meds galore...and I am still looking for the answers and
appreciate all info and views in a polite manner!!!
Sorry this is so long. I just would hate to loose the info and
support I only recently found due to personal attacks or politics.
---------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/16/98 8:44 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081703441200.XAA06910@ladder03.news.aol.com>
Thanks for the info on the Usenet sites, I didn't know about them as
just recently able to be on-line and that time is limitted. We could
use all the info on different sites we can get!
-----------------------
Subject: Re: The Term TMJ
Date: 8/16/98 8:45 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081703454500.XAA26934@ladder01.news.aol.com>
I am unfamiliar with your book. Now that you have let me know you
wrote a book, please let me know its title... so that I may read it.
Thank you in advance.
-----------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/16/98 8:51 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081703512600.XAA08018@ladder03.news.aol.com>
Perhaps, the comment was made to help new people from leaving this
board forever! I sure would not want to read messages like that when
I came for support and insight. I know I would not have kept coming
to this board should that have been all that I read when I first came.
Thanks for the reminder of what kind of tone is needed to help new
fellow pain sufferers feel welcome!
-----------------------
Subject: Re: The Term TMJ
Date: 8/16/98 8:56 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081703564500.XAA08854@ladder03.news.aol.com>
Subject: Re: The Term TMJ
Date: Sun, Aug 16, 1998 23:45 EDT
From: Kandi61096
Message-id: <1998081703454500.XAA26934@ladder01.news.aol.com>
I am unfamiliar with your book. Now that you have let me know you
wrote a book, please let me know its title... so that I may read it.
Thank you in advance.
_________
Kandi, I hope you can understand that there is some disagreement
happening in the folder. I've noticed your posts, but I resist
replying because of this unpleasantness. There is something happening
here that should not be... but that's the way it is sometimes.
I'm sorry. There are posts in the folder about the book and I hope
that will help direct you.
Take care,
Webby
------------------------
Subject: Re: 1992 Congressional Hearing
Date: 8/16/98 8:59 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081703590700.XAA29000@ladder01.news.aol.com>
Yes, surprise, it would interest me - yet please don't be so rude and
assume it would not. I have not had the same exact experiences as
you, yet I would like to end the politics of TMJ/TMD. So, sincerely,
please e-mail me the info rather than just telling me I'm not
interested. Thank you in advance.
------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/16/98 9:00 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081704003400.AAA29221@ladder01.news.aol.com>
Subject: Re: No TMJ specialists in the USA
Date: Sun, Aug 16, 1998 23:51 EDT
From: Kandi61096
Message-id: <1998081703512600.XAA08018@ladder03.news.aol.com>
Perhaps, the comment was made to help new people from leaving this
board forever! I sure would not want to read messages like that when
I came for support and insight. I know I would not have kept coming
to this board should that have been all that I read when I first came.
Thanks for the reminder of what kind of tone is needed to help new
fellow pain sufferers feel welcome!
_____
Kandi, you should be sure to understand that there are ALWAYS two
sides (at least) to any story. What you see here, is not really the
way things are. You see the reflection that the ones in power here
want you to see. Be very, very careful who you believe and what you
believe. This is all a part of the TMJ crisis. Sad but true.
Patients against patients is a terrible thing. No one knows for sure
if this group is made up of patients or people
here promoting something else. (AOL will remove this post because it
is against their TOS, I'm sure. What's new?)
Webby
------------------------
Subject: Re: 1992 Congressional Hearing
Date: 8/16/98 9:05 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081704052700.AAA29990@ladder01.news.aol.com>
Subject: Re: 1992 Congressional Hearing
Date: Sun, Aug 16, 1998 23:59 EDT
From: Kandi61096
Message-id: <1998081703590700.XAA29000@ladder01.news.aol.com>
Yes, surprise, it would interest me - yet please don't be so rude and
assume it would not. I have not had the same exact experiences as
you, yet I would like to end the politics of TMJ/TMD. So, sincerely,
please e-mail me the info rather than just telling me I'm not
interested. Thank you in advance.
______
Kandi,
If you truly are interested, you are the first person on the internet
or in AOL who is coming from a patient background who has expressed
interest or concern. As you see, six years is a long time for NO ONE
in this country (patient or other) to be concerned about this matter.
Maybe now you can understand why you felt as though you would be
grouped together with all the others. It's possible that one foreign
patient expressed concern... but no Americans have said written
anything in public nor have they stated anything verbally.
Webby
------------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/16/98 9:10 PM Pacific Daylight Time
From: Kandi61096
Message-id: <1998081704102800.AAA00944@ladder01.news.aol.com>
Webby,
I do believe in what you have to say, just maybe not how it is said.
Yet, please lets work together. If it is a problem posting such info
here on aol, then e-mail it to other members in a polite manner. I
know there is a big political mess going on. There has been since
1984 when I first had jaw problems probably. Remember, Cohen
discovered tmj disorders how many years ago? There are ways to get
info out to people and get people working
together for common causes. Sure, the Dr.s or insurance companies or
who knows what may be monitoring these boards, yet these boards are
only one avenue of information.
-----------------------
Subject: Re: No TMJ specialists in the USA
Date: 8/16/98 9:26 PM Pacific Daylight Time
From: BrierNet
Message-id: <1998081704263300.AAA03155@ladder01.news.aol.com>
Kandi, I'm sorry you can't understand why communications are as they
are. Maybe you've come along a dime short and a day late. I don't
know what to tell you, but I think you'll have to carry on on your own
now. (It was Costen, not Cohen, BTW.)
I don't want to participate in this environment any longer. There are
those here who will think this represents a success on their part.
But I have news for all those who might think that: This is not a
success for them. This is a failure that they wanted to see happen.
I just don't care anymore.
Webby
Subject: Re: No TMJ specialists in the USA
Date: Mon, Aug 17, 1998 00:10 EDT
From: Kandi61096
Message-id: <1998081704102800.AAA00944@ladder01.news.aol.com>
Webby,
I do believe in what you have to say, just maybe not how it is said.
Yet, please lets work together. If it is a problem posting such info
here on aol, then e-mail it to other members in a polite manner. I
know there is a big political mess going on. There has been since
1984 when I first had jaw problems probably. Remember, Cohen
discovered tmj disorders how many years ago? There are ways to get
info out to people and get people working
together for common causes. Sure, the Dr.s or insurance companies or
who knows what may be monitoring these boards, yet these boards are
only one avenue of information.
-----------------------
Subject: Re: This great book
Date: 8/17/98 5:19 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081712190000.IAA26011@ladder01.news.aol.com>
The ISBN number is meaningless when you won't give me the Publisher,
publilsh year, or how the authors are listed. Even is this electronic
age, there are still 3 ways to search for a book- AUTHOR, TITLE, or
SUBJECT. I need the publisher and year to narrow the search.
So far, this title The TMJ Iatroepideic:.. (Yes,I spelled it wrong at
first) does not come up in any search. Nothing comes up by subject
either. So that's why I keep on asking for the Publishers name, year
of publication, and how the author's name is listed.
Since since it seems you can't give me this info, here's an easier
question: WHERE can I find this book????
----------------------
Subject: Re: The Term TMJ
Date: 8/17/98 6:25 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081713253000.JAA00847@ladder01.news.aol.com>
HI Webby
In my opinion, when info. is shared in a rational and informative way,
people will listen and respond in kind. Personally, I can do without
the talk of cults, groups, and leaders. All of Bruce's many
informative posts of a medical nature were excellent. And perhaps you
had some too, there have been just so many, I am losing track of who
said what. Now, those types of posts, I can sink my teeth into! HOw
about some more of those?
Snow
---------------------
Subject: Re: The Term TMJ
Date: 8/17/98 6:36 AM Pacific Daylight Time
From: Snowbyrd97
Message-id: <1998081713364400.JAA01779@ladder01.news.aol.com>
oopps!
Regarding my previous post, I meant to say that perhaps it would be
helpful if they were given one or two at a time for purposes of
discussion. Thank you.
Snow
---------------------
Subject: Re: This great book
Date: 8/17/98 6:42 AM Pacific Daylight Time
From: Br00770
Message-id: <1998081713424500.JAA12371@ladder03.news.aol.com>
I have already posted it and the PRC people took it down. If you are
truly interested in obtaining it you will have to post your question
to me in Usenet's alt.support.jaw-disorders or sci.med.dentistry
BTW, you spelled the title wrong again.
---------------------
Subject: Re: This great book
Date: 8/17/98 7:35 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081714352700.KAA07238@ladder01.news.aol.com>
<<<Including the publishers name and address.>>
I can't find it - Please post again!
------------------------
Subject: Re: This great book
Date: 8/17/98 8:08 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081715080500.LAA20690@ladder03.news.aol.com>
Subject: Re: This great book
Date: Mon, Aug 17, 1998 08:19 EDT
From: HEYMOM1
Message-id: <1998081712190000.IAA26011@ladder01.news.aol.com>
The ISBN number is meaningless when you won't give me the Publisher,
publilsh year, or how the authors are listed. Even is this electronic
age, there are still 3 ways to search for a book- AUTHOR, TITLE, or
SUBJECT. I need the publisher and year to narrow the search.
So far, this title The TMJ Iatroepideic:.. (Yes,I spelled it wrong at
first) does not come up in any search. Nothing comes up by subject
either. So that's why I keep on asking for the Publishers name, year
of publication, and how the author's name is listed.
Since since it seems you can't give me this info, here's an easier
question: WHERE can I find this book????
_________
You are wrong. The ISBN number on a book is the ONLY thing that
really means anything. Many books can have the same title... so the
title is not your key. As far as this word you seem unable and
unwilling to learn (it has been written many times and you should pay
closer attention to what others write if what they write is that
important to you.)
HeyMom, you have no sincere interest in reading the book so why are
you asking for all of this info? Maybe you want our posts to appear
as those we are "promoting" our book... which is somehow against your
TOS... and then you can see that this account is shut down... it could
be. Be are not promoting it; you are. You are just trying to do that
and you are trying to promote a rumor stating that there isn't any
such book because you looked for it
and you couldn't find it and therefore , in your opinion which is
valued by others.... they will all believe you when you say... the
book does not exist. So I guess in the way you see this, we are here
to promote a book that doesn't exist.... hmmmm. Well.... it's no
stranger than anything else going on around here and elsewhere.
I'm sorry but I cannot bring myself to help you any further.
Webby
--------------------------
Subject: Re: Chiropractor
Date: 8/17/98 8:56 AM Pacific Daylight Time
From: Iwandato
Message-id: <1998081715563600.LAA16080@ladder01.news.aol.com>
Hi all!
I'm aware that my message might very well be outdated by the time that
everyone else reads it, but I thought perhaps I might help to clarify
some of the questions about chiropractic. <<What exaclty does the
chiropractor do? I mean, how do you know if you back and neck are out
of alignment? >>
A chiropractor finds and removes verterbral subluxations. In other
words, a chiropractor will find what's wrong and fix it. When a
vertebra is "out", it can interfere with nerve signals. By finding
this moved vertebra and putting it back in place, the nerves can be
restored to normal function.
In the case of tmd/tmj, the jaw, as well as any number of bones in the
neck may be moved and can interfere with nerve signals. Even if it
does not seem as if the neck is out, it may very well be, and a
chiropractor can find this and adjust it.
Keep in mind that some chiropractors may not adjust you on the spot,
as their main focus may be well-care and not just pain treatment. It
may be necessary to consult several practicioners in your area to find
one that can treat you more promptly.
I hope I have been of some help, please feel free to contact me with
any questions.
--------------------------
Subject: Re: This great book
Date: 8/17/98 9:21 AM Pacific Daylight Time
From: BrierNet
Message-id: <1998081716215000.MAA29008@ladder03.news.aol.com>
Subject: Re: This great book
Date: Mon, Aug 17, 1998 08:19 EDT
From: HEYMOM1
Message-id: <1998081712190000.IAA26011@ladder01.news.aol.com>
The ISBN number is meaningless when you won't give me the Publisher,
publilsh year, or how the authors are listed. Even is this electronic
age, there are still 3 ways to search for a book- AUTHOR, TITLE, or
SUBJECT.[cut]
___________
Heymom, maybe you don't know what an ISBN number is? Is that the
problem? Or is this just a convenient excuse? I suggest you do some
research into what ISBN numbers are before you decide as to their
usefulness.
Webby
----------------------
Subject: Re: This great book
Date: 8/17/98 9:35 AM Pacific Daylight Time
From: GrnEydImp
Message-id: <1998081716351000.MAA20557@ladder01.news.aol.com>
Webby and Chang,
We are not near the heathens you make us out to be. You want to talk
about games? Just exactly what is it you are doing by not answering
HeyMom's questions? Seems to me you could have saved yourself about 10
or so posts if you would just answer her question and get it over
with. Sheesh!
--------------------------
Subject: Re: This great book
Date: 8/17/98 10:00 AM Pacific Daylight Time
From: Milocat4
Message-id: <1998081717000500.NAA03687@ladder03.news.aol.com>
HeyMom,
Let me help a bit. An ISDN number is a number issued for purchasing a
book from a data base, basicly. It is a tool for finding an article
or book. kind of like a social security number is to people. In
Chang's prior post, he listed the publisher as Briernet, who we know
also as webby. This indicates to me that it was a private publishing,
probably available only by special order. Hope this answers your
questions. ; )
Pat
(aka Milocat4)
--------------------------
Subject: Re: TMJ or TMD and the Chiropractors
Date: 8/17/98 10:06 AM Pacific Daylight Time
From: Jennoodle
Message-id: <1998081717061000.NAA04418@ladder03.news.aol.com>
I have had good luck with joint mobility from a physical therapist !
I also ran into a doctor of osteopathic , who adjusted my neck and
back very gently and was able to prescribe the appropriate meds
at the same time . A doc of Osteo is hard to find , but well worth
the effort . Good luck .....Jennoodle ~
------------------------
Subject: Re: This great book
Date: 8/17/98 10:11 AM Pacific Daylight Time
From: MeghanNYC
Message-id: <1998081717111300.NAA05009@ladder03.news.aol.com>
As someone who has been in publishing for years, I think what
Webby & Chang are avoiding saying is that their book is
self-published.
In other words, a vanity press. It may well be filled with useful
information
(although the reviews of it I've read on the jaw-disorders newsgroup
suggest otherwise), but a vanity press book tends to be very difficult
to find by conventional methods. For example, it did not show up
on either Amazon.com or barnesandnoble.com, with author or
title searches. The best way to find the book, for those so
inclined,
would be to go to your local bookseller with the ISBN, and then
it could be special-ordered, which would probably take 6-8 weeks
at most stores. Generally speaking, though, vanity press books
are not particularly available to the general public, and so, most
authors of that sort sell them directly--be it through a web site,
from the trunks of their cars, or whatever the case may be.
I do actually think there is a great need for a good book about TMJ,
from the perspective of a patient, or patients, but it would need to
be written in as wide-ranging a way as possible in order for a
mainstream publisher to be interested. Worst case scenarios,
and nightmare tales of surgical disasters should be part of a
book like that, but the full gamut of the TMJ experience would have
to be explored in an approachable and user-friendly way, in
order to make such a book a profitable venture. Otherwise,
the subject is just too esoteric for the public at large.
Publishing is, first and foremost, a business, and
their bottom line--for better or worse--is always to sell
books, not attempt to change government policies or
the world.
----------------------
Subject: Re: To Snow was, Re: The Term TMJ
Date: 8/17/98 11:21 AM Pacific Daylight Time
From: Milocat4
Message-id: <1998081718214800.OAA02192@ladder01.news.aol.com>
Chang, you said, "I simply do not believe that most of the screen
names here are really those belonging to valid patients with serious
problems affecting the use or comfort of their jaws/jaw joints. "
I have a question for you to ponder. How is your attitude different
from the many doctors who simply do not listen to their patients and
think they know what is best?
The people coming through these boards are in pain and seeking support
and comfort. One of the goals of the Pain Relief Center is to provide
support and encouragement for members. This board has the same goal.
Comfort and support. Information provided in an atmoshere of comfort
and support. A support group. I personally know many of the
"screenames" who post in these boards. These people are ordinary
citizens, working jobs, some on disability, some students, some
parents. These PRC members are the best!!
Pat
(aka Milocat4)
----------------------------]
Subject: Re: This great book
Date: 8/17/98 11:22 AM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081718222500.OAA02264@ladder01.news.aol.com>
Exactly my point.
These are simple questions: Publisher and year
What author's name is the book under? Surel'y it's not *Chang and
Webby*
The refusal of answering these simple questions leads me to believe
there is no such book, or maybe MeganNYC is correct about it being a
*Vanity* book. What I haven't mentioned before is that I am a
professional librarian, and there is still no record of this title in
the Library of Congress, or Books in Print, which is an Union Catalog
of all in print books. I know what an ISBN number is!
The *Ginger Growers* bit was Comic Relief - that's all.
I am satisfied , once again that /et al are in Nevernever Land - total
fantasy. The rest of you can believe whatever.
I think I proved my point now. I'll leave the boards to the rest of
you - hopefuly for POSITIVE
suggestions and support.
Go ahead and write your email about doubting my
credentials,Chang/Webby/Briernet. I know what the truth is.
-----------------------
Subject: For anyone:
Date: 8/17/98 12:53 PM Pacific Daylight Time
From: HEYMOM1
Message-id: <1998081719534700.PAA24344@ladder03.news.aol.com>
For anyone who is tired of all this nonsense - here's a great site for
you! It's just for laughs!
CGFA- E
--------------------------
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