Hi there. I am new to this forum. I
can't tell you how happy I am to find
this. Here's my story......Sorry if
it's too long. I am 33 years old and I
have been suffering from tmj for so long
that I can barely remember a time when I
didn't. I have had 3 surgeries so far.
The first surgery was around 11 years
ago on both sides (they put the disk back
in place on the right side and made me a
disk out of ear cartilege for the left
side). I had another on the right a year
later and saw a different surgeon who took
out my disk completely. Last may I went
back to my original surgeon and he did
another surgery and put a silicone disk in
the right side that is temporary to make
room for an ear cartilege disk so a 4th
surgery will happen at some point.
I have arthritis in both sides of my jaw
and my Dr. Said that my joints are half
of the size they should be and that they
are degenerative. I saw him last week and
he said come back in 6 months for mri. I
am so paranoid that I will have to have
total joint replacement at some point.
I have daily chronic pain - pretty much
every tmj symptom there is I have - severe
headaches, ear aches, jaw pain, neck pain,
sinus pressure, etc. I have a bite splint
but it doesn't help. Even meds (pain meds
and muscle relaxants) don't help much
anymore. I have tried physical therapy
and acupuncture but it helps for just a
second and then the cycle starts again and
everything tightens back up.
I feel like I have tried everything and
don't know what else to do. Any
suggestions would be greatly appreciated.
Just knowing that others can relate
helps a lot.
|
catswold
Supporter
Joined: 10 Oct 2005 Posts: 404 Location: Flint, Michigan
Posted: 03-02-06 23:25pm
I'm so sorry to read about everything you
have gone through. Your case is so much
more complicated than mine that it's
difficult to come up with any helpful
ideas. I can think of two ideas, and you
may have already tried them, but here goes
-
pain management - seek a pain doctor,
neurologist or clinic (you may have to
travel to find a good one) who will be
able to prescribe long-acting pain
relievers such as methadone or oxycontin,
etc. Also trigger point injections might
help. Tens, ultrasound, etc.
The other suggestions is regular
therapeutic massage by a trained therapist
in tmj, pressure point or cranial sacral
work. Massage is different in that you
will go to the therapist for a long period
of time, not like physical therapy where
they have a time goal. It might end up
being once a week for a while and reduce
to once a month. You might end up having
to try 2 or 3 or 4 therapists. It can be
difficult to find the right therapist, but
when you do, it is great.
Oh, another idea is to get a 2nd and even
3rd opinion when it comes to a point that
another surgery is a possibility. You
might even do that now and see what other
tmj "specialists" have to say about your
case instead of waiting 6 months.
I pray that you will find the pain relief
and help that you need. My heart goes
out to you and if I can do anything else
to help, please just ask.
God bless...
Carol
|
klafontain001
New User, Becoming EHEALTHy
Joined: 01 Mar 2006 Posts: 14
Posted: 03-03-06 02:04am
Hi carol. Thank you so much for your
reply and kind words. It's ironic that
you mentioned a pain management clinic
because I just called my dr's office (my
primary car Dr. Who has been treating me
for my tmj) yesterday to see what she
thought about me going to a pain mgmt
clinic. She said she would write up the
form and send it over with my chart notes
and that someone from the pain management
clinic will call me to set up an appt. I
have no idea what to expect - do you have
any experience with pain management
clinics?
Unfortunately my insurance won't cover
massage of any kind and we have no extra
money as we only have on income (my
husband is a stay at home dad). Even
when I went to physical therapy and they
did some massage and billed it as such
they would not cover that portion of it.
It just gets me that I have to pay a $25
co-pay for acupuncture and physical
therapy and they don't cover massage at
all yet I only have to pay $5 for my
prescription of t3's...Crazy!
The 4th surgery will have to happen at
some point because the silicone disk that
they put in can only be in there for up to
6 years. I have thought about going to
see another tmj specialist just to see if
there is anything else that can be done
(like maybe my bite is off or something
and is contributing to it). Sometimes I
worry that maybe i'm just a wimp and have
a low pain tolerance or something.
What is your situation with tmj? Have
you had it long? Thanks again for
replying to my message. It means a lot
to have that support. I know friends and
family mean well but they have no idea
what we experience and I know they are
sick of hearing me say "i have a headache"
every day. If you want to email offline
my email is smlafont@
yahoo.Com.
God bless,
kerianne
|
catswold
Supporter
Joined: 10 Oct 2005 Posts: 404 Location: Flint, Michigan
Posted: 03-06-06 12:21pm
Hi kerianne,
i do not have experience with pain
clinics. I tried to find a pain doctor
in my area but none would work with me
because I have tmj. Duh, that's why I
was trying to find a pain doctor - I have
pain. But no, tmj is treated by dentists
or its like an arthritic knee - take an
anti-inflammatory and put up with it (this
was their comments to me.) it was a
pretty frustrating time trying to find
help.
My family doctor finally found a new young
neurologist who was willing to try and
help me. We've had an interesting
relationship but it's working out. I'm
on lyrica but i'm planning on weaning off
of it soon. The first drug we tried,
methadone, I had side-effects from it.
He also referred me to an excellent pt,
but I now go to a cranial sacral massage
therapist (yes, money out of my pocket
that I don't have). A muscle relaxant -
zanaflex - that my pd just prescribed
works miracles for me. It's the only
drug to ever break up a bad tmj flare-up.
I'm in love with it and hope and pray it
works forever when needed.
My tmj has been doing pretty good lately.
I've had it for 25 years and it is a
nightmare. You live for the pain-free
times that sometimes don't come and
sometimes do. I wasn't treated properly
when it first flared up and that
contributed to permanent damage (braces
were put on first with no pain-relief
help). That's why I try and tell newer
tmj sufferers to look for good tmj
"specialists." concentrate on taming the
pain before working on a permanent fix.
Conservative methods tend to be the best
methods and reducing stress is number one
in "curing" tmj.
I'm sorry to hear that you have had
surgeries and are going to need more.
I've heard too many negatives about
surgery and I thank god that I didn't,
though, I looked at doing so 3 times over
the years. Of course, everyone is
different, so many times surgery is a
necessity for function of the jaw, more so
than pain. Trying to find pain relief
for tmj, though, can be very frustrating
because of many doctor's ignorance. Keep
fighting to get the help you need.
Let me know how the pain clinic
appointment goes. Make sure to ask tons
of questions as to what they are going to
do, etc. Take someone with you if you
want or have questions written down.
All the best for you,
carol
|
klafontain001
New User, Becoming EHEALTHy
Joined: 01 Mar 2006 Posts: 14
Posted: 03-06-06 15:18pm
Hi carol,
i know exactly what you mean about being
told to take an ibuprofen and put up with
it. I have gone through many primary
care doctors because none of them would
take my tmj pain seriously. One
suggested I see a psychiatrist. It is so
frustrating. The primary care Dr. I
currently have is the first one to ever
take my pain seriously and to really try
to help me deal with the pain. I am very
grateful for her.
What is lyrica? I have never heard of it.
I have never tried zanaflex. I am
currently taking flexeril and it doesn't
seem to do anything but make me tired so I
can only take it at night and doesn't seem
to stop me from clenching. I wonder if I
should ask my Dr. About zanaflex? For
pain I am taking t3's and seem to have to
take them daily and when I have a really
bad flare up that t3's can seem to help, I
take vicodin but it doesn't seem to help
much more. I don't know what the primary
cause of my tmj is but I had retainers as
a kid and headgear because my overbite was
so bad and then I had braces on my upper
teeth only for cosmetic reasons which I am
sure didn't help. I have been in a few
auto accidents, had my wisdom teeth out
and also fell off a deck in highschool and
landed on my face so I am sure there are a
ton of things that have contributed to it
over the years. I do think my first
surgery was necessary because I had such
severe jaw pain and it did help with that.
At the time I remember my surgeon saying
after the surgery that I had the jaw
joints of a 90 year old. I really
naively thought that surgery was my fix
and that my problems would be all over.
If I could do it all over again I would
never have had the second surgery which
lead to the third.....
I chose my current insurance plan because
it was the only one my work offered that
covers tmj and I feel lucky to have it
because I know it is most often not
covered. I will definitely let you know
how the pain clinic appt goes. I haven't
heard from them yet. I am kind of
nervous going there - afraid they are
going to act like it's all in my head like
many dr's before have. I don't know how
many times i've been told I am just having
rebound headaches from taking meds daily
which is so frustrating.
Thanks so much for all of your support.
It means a lot. What is your email
address? I would love to be able to
email you off-line. :)
kerianne
|
catswold
Supporter
Joined: 10 Oct 2005 Posts: 404 Location: Flint, Michigan
Posted: 03-06-06 15:44pm
My email address is cargill
214@yahoo.Com. I can't email from
yahoo while at work very easily that's why
I didn't email you earlier.
Definitely ask your doc about zanaflex.
I have tried flexerill and something else
and they didn't touch me. Zanaflex does
make me very relaxed to the point my eyes
don't focus, so i've only ever taken it at
home and when I had a dental appointment
the other day (mom drove).
I wouldn't suggest taking tylenol 3 every
day. They can give you rebound
headaches. I've never found them to work
for me sadly. Now, vicoprofen works
better for me than vicodin, so you might
want to check that out. I try not to
take any pain medication every day (except
lyrica now) because I fear that they will
lose effectiveness, so I wait sometimes
until I am dying of pain before taking
anything. Crazy, I know.
Hey I just thought - they need to come out
with ibuprofen 3 (with codeine) like they
did with hydrocodone (vicodin and
vicoprofen). Hmmmm, where are the drug
companies?
Lyrica is a long-acting nerve pain
reliever. I'm at the lowest "workable"
dose and I don't really know if it is
working because i've done so many other
things to try and help me at the same
time. I recently had my bite balanced, I
go to a new mt, and i've just added buspar
with my prozac at night. I have to take
prozac for tmj and menopause but recently
read that it causes clenching or grinding
while sleeping. It was suggested to add
a small dose of buspar (an anti-anxiety
drug) to my night pills and it might work.
I don't know how the prozac helps my tmj
pain anymore but when I try and wean off
of it, my tmj goes bonkers. Anyway, with
all those changes, my tmj has been doing
much better. I hate always having to
think about it though. Tmj. The devil.
They sure do go together quite well.
(sarcasm here)
i've got to get back to work. Hope you
will email.
Carol
|
sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 03-06-06 16:58pm
Hi there! I have learned that the more
sugeries, the more scar tissue and the
more possibility of arthritis. I am no
Dr., but I have learned this thru common
sense and experience. Do you use a night
guard? I am sorry you have to live in
this much pain! I have full body pain
pretty much all of the time so I do
understand where you are coming from. I
wish their could be a miracle cure for a
lot of us!
You are in my thoughts!
|
klafontain001
New User, Becoming EHEALTHy
Joined: 01 Mar 2006 Posts: 14
Posted: 03-07-06 02:07am
Hi carol. Thanks so much for the reply.
I will email you offline :)
sandyallen - hi there. I do use a night
guard and I wear it every night. I wish
there could be a miracle cure for us too.
That would be so great. Just knowing
that there are others who are going
through the same thing helps so much
though so thank you so much for your
posting!
