Reflections on the Past Year

Stacy

I don't have jaw pain or even suffer from TMJ, I can only imagine how awful it must be.

I remember having an adsessed tooth requireing a root canal once and while waiting until the abx had getten control of the infection, I had decided right then that jaw or mouth pain has got to be the very worst.

I do suffer though with chronic spinal pain and Fibromyalgia though.

I really thought your article was very good and hit home with me, as I think your comments, thoughts and suggestions can be related with and for any pain sufferer.

I've been going through a time of exceptance with my pain and illness over the course of the past several months, trying additional treatments, supplements and anything possible to either benefit by creating even a slight amount of relief or just making you learn to better face the daily pain and discomfort.

You did not mention if you worked or not, but I guess you must be, since your on your own.

When I considered moving away from family and all that's familiar to me, I could not even consider it.  It just seems too frightening.  You must be a very brave woman and you should really be proud of yourself.  I think your story could certainly help other with the courage to step out and start a new life in another city too.

Thank you for sharing

Betty

Hey Stacy I had been thinking about you lately. I have changed my numbers but my email is still the same. I miss the old board and the old group. This one not so much to hard to get on and alot of the times it wont allow me on. Very good article. If you are ever heading toward Fresno give me a email and maybey we could get togather some time since you are so close yet so far. Still no luck on my end for a dr. And still no money either. I have no clue what to do or where to go with lessing function and pain. Again glad to see you posting finally.

Angi 

Stacy

I admire your strength and courage in fighting the battle against TMJD.  I hope with each day that passes by you will become more pain free!!

And I wish you well with your new home.

It must be fun and exciting to be on your own. I love San Francisco it's such a great city with lots to do!! 

I am hoping that in the future Specialists will do more extensive research in this disorder and perhaps come up with customized treatment options for each individual who is suffering from this disorder. They should also research how this little joint can affect the whole body

and cause so many different functions to become out of 'whack' Also Insurance companies should DEFINITELY realize that this is a medical condition and not in our

heads.  It should be treated as such especially if an MRI does show disfunction.

I don't understand why this disorder isn't so

widely known in the medical field? If I were a doctor I would be researching it and coming up with better treatment plans-a joint approach with an MD and a Dentist/

oral surgeon all working together to figure out each individual situation. 

Wishing you pain free days!

Daisy

Hey Stace.. Great post! I have seen you go through all of this during the past year. Your surgery, your pain, your ups and downs, your move out here, etc.. I think you are one of the strongest women I know - honestly. You are so educated about TMJD and chronic pain, unfortunately it's mostly because you had to with all you've gone through (although I know you enjoy studying it too), but either way.. you have this knowledge that has helped so many people.

Let me tell you guys that when I was delivering my baby, the nurses were all giving me a hard time about pain meds and not understanding chronic pain (treated me as though I didn't speak english, I was this addict, and chronic pain was something they had never heard of). Stacy tried to reach me a few times in the hospital to check on me, and I was a complete wreck - not really talking to anyone at the time because I was either with the baby or curled up in a ball sobbing in pain. My husband called her for me to let her know I was thinking of her, and I swear I thought he had gotten lost because he was outside on the phone so long with Stacy! He comes back into the room and just says "wow"....first he said "she can sure talk".. LOL.. (which I know and love about her).. and then he was telling me how he updated her on what was going on with me, and Stacy said to ask for this, or do that .... and that she completely empathized with me (duh). He was SO blown away at how strong and confident she was, how much knowledge she had (he says "my god... you and stacy know more about pain, the meds, the process, etc. than anyone in this hospital!") It was incredible, yet very sad, that that was indeed the case!!  Stacy gave my hubby some pointers and really blew him away with her understanding and knowledge (again, more understanding than anyone with a degree on the maternity wing).  She's really been through a lot I told him... and she knows the system! I think at that moment we both wished Stacy was there delivering my baby.... haha... ok, so maybe not quite completely "delievering" her, but you get my point. LOL.  He was/is very happy I have a friend like Stacy in my life... and I think with the next baby, she'll be stuffed in my suitcase to handle everyone for me!  

It's been amazing to have you on my side Stacy, to share your knowledge, to lift me up and encourage me through all my ups and downs. It's been a pleasure to become your friend and watch you grow as a person through all of your experiences. You are learning from everything - good and bad - and that's all you can do!  I think you've done great!! I'm so proud of you the drive and courage you have shown in finding your way!

Your friend,

Nicole

Thank-you Stacy for reflecting on your journey this past year.  I had shared before how your information and experience through the joint replacement surgery had been so helpful to me as I came to the end of my treatment options with the joint replacement (but with a rib-graft) as my last treatment option.  I am happy to say that I am still hanging on, prolonging the inevitable surgery as long as possible.  As you mentionned, I am using pain management, meds, excercise and massage therapy on my neck, to cope with my increasing pain.  I can appreciate the questions you posed to yourself about how much pain to endure before attempting a surgery that holds minimal hope for improvement to this chronic pain situation.  I think about what it will finally take to decide that I am no longer able to manage and have no other solution but to have the surgery.  Until then, I pray for clarity in the solutions I do choose, which meds to take, what things I will give up in order to live my life, etc. and keep hope that in the future the answers are much less intrusive and more promising.

I will continue to follow your journey.  I have so much more to learn from your experience and the experience of others on this forum.  Thank-you for bravely sharing, Tink*

Stacy, et al,

Thank you for your post. I think there may stil be hope, if the upper cervical spine is contributory.

I don't know much about your history or curent symptoms other than they are related to the TMJ.

One additional proimal contributor to TMJ symptoms can be inputs from the upper cervical spine. Within the spinal cord is what is called the cervico-trigeminal nucleus. You can do a literature search on that if interested. Basically, there are connections with the upper cervical nerves (#1, sometimes #2, and perhaps less common #3), and the nucleus (the part in the brainstem and spinal cord where the nerve originates) of the nerve that supplies the jaw, TMJ, etc.

It is my belief that one of the cervical nerves that may oftentimes be overlooked, is the 3rd one. A deep inquiry into anatomy reveals that it has a very vast supply to the neck and to deeper structures of the head and neck and it even joins the nerve supply to the TMJ (5th cranial nerve) superficially/peripherally (away from the spinal region). However, at first glance in some anatomy texts or charts that show nerve supply to the skin, appear to grossly underrepresent its vast connections.

I believe that this 3rd spinal nerve is very much underdiagnosed and therefore undertreated.

My own TMJD resolved after more than 30 years when I got appropriate care for my cervical spine and I no longer have atypical facial pain.

When I asked for a cervical discogram, it was significantly helpful re diagnosis and the flurosopy that is part of a discogram was very helpful (more so than x-rays, Ct scan, MRI) in visualising the pathology. Unfortunately discograms are rarely used because they only give new information 17% of the time, and medicine is geared toward the majority not the minority, etc, etc.. Every diagnostic test, be it x-ray, CT, MRI, discogram, etc has something to offer (+) but has limitations (-).  diagnostic block can be very helpful in determining if the crvical nerve roots are involved. I am NOT suggesting that any of these diagnostic tests are appropriate for you or anyone else, but if not considered previously, an inquiry with a competent health care provider may be helpful in addressing the topic.

I hope that I did justice to introducing this topic and of course it does NOT apply to all with TMJD, yet does appear to be overlooked.

I could go on but will stop here.

Best Regards,

Jerry Hesch, MHS

Hey!  Thanks for the post. 

MANY/most people have NO idea that I will not have pain relief from having new joints put in the spaces;  I, however, DO.  I am looking FOR function and I have made this very clear to every doctor I have seen.  My family (the ones who don't know me) says things like: "Oh, after you get the new joints, you'll feel a lot better", and I have to go into how that is not true, over and over again.  I think it was a relief to the surgeons I have seen and the one who will finally be doing my implantation surgery in January.., and one helluva surprise, too!  

I did get a call the other day from his assistant;  she wanted to be sure I would get myself set-up with a pain clinic!  I, of course, laughed as, had I not been with a pain doc for the past dozen years, I would simply NOT be here. 

So, I am GLAD you have come to accept the realisation that it, the pain, does not really go away.  It does and can be better on certain days..  the winters are awful and summer days can be awful, too.. BUT, we can eat (most times) with the joints in and, for me, THAT is something(!),  as I dwindle away to almost nothing while awaiting the implantation.. 30 pound weight-loss thusfar).

 THANK you for this post though.  I think I need to forward it to a LOT of my family and friends...

~~best to you, hon.  I hope you have more good days than bad!  Anne

Hey Stacy,

Thanks so much, as always, for another beautifully written post! Your posts are always so eloquent and helpful to others. I know that it must be difficult at times for you to discuss your pain, but you do so anyway to help others who are suffering. I am glad that you are happy in San Francisco, and I wish you happiness there for many years to come! :)

My name is Tony and I invented the Spacesleeper Pillow.

Although it's intention was to prevent sleep wrinkles it works

great to rid pain caused by sleeping on the jaw. There are doctors

in Texas and Nevada that give the pillow to many of their tmj

sufferers. Read the testimonials and info at www.spacesleeper.com

It's only $49.95, thats not much to sleep comfortably without pain.

Thank you for your time, I really hope this helps!  

TODAY IS JANUARY 11, 2008.  I READ YOUR POST TODAY AND WOULD LIKE TO TELL YOU AND OTHERS AS YOU SAY ALL CASES ARE DIFFERENT.  MINE IS NOT THE SAME AS YOURS.  STACY MY NAME IS SHARON AND I HAVE A POST HERE CALLED PIA.  I HAVE MORE MEDICAL PROBLEMS THAN I CAN KEEP TRACK OF.  I ALSO HAVE SJOGRENS DISEASE WHICH MOST PEOPLE HAVE NOT HEARD OF.  IT IS PART OF THE ARTHRITIS FAMILY AND ONE I WISH DIDN'T FIND ME.  IN 1991 MY JAW WAS BROKEN BY AN ORAL SURGEON WHO WAS AT THAT TIME TRYING TO PUT IN AN IMPLANT.  INSTEAD HE BROKE ME JAW.  I WON'T GO INTO THAT WHOLE STORY.  I WILL SAY MY HEALTH WAS A BIT BETTER BACK THEN SO I WILL NOW START FROM HERE.  I HAD CUSTOM MADE JOINTS MADE TO REPLACE THE JOINTS IN MY JAW BOTH SIDES.  YEARS AGO I HAVE OPEN JOINT AND ARTHROSCOPIC SURGERIES.  THEN  NEVER WORKED AND AS THE YEARS PROGRESSED I ENDED UP NOT BEING ABLE TO OPEN MY JAW AT ALL .  IT ONLY OPENED 2 MM AND 40 IS NORMAL.  EATING WAS A NIGHTMARE AND THE PAIN BECAME SO HORRENDOUS I DIDN'T KNOW WHAT TO DO.  NOT ONE ORAL SURGEON WOULD LOOK INTO MY MOUTH AS I ALSO HAD [WHAT I FOUND OUT TO BE LATER A HUGE LUMP THAT WAS A MAJOR INFECTION LYING ON THE GUM]  IT COULD HAVE BEEN CANCER FOR ALL I KNEW BUT NO ONE WOULD LOOK.  NO ONE WANTED TO TAKE THE CHANCE DUE TO MY CONDITIONS.  HEART AMONG THEM.  EVENTUALLY I WENT TO THE NOVA SOUTHEASTERN UNIVERSITY HERE IS FLORIDA WHERE I LIVE AND WENT TO THEIR DENTAL CLINIC.  I ENDED UP WITH THE CHIEF OF THE DEPARTMENT AS I FOUND OUT MY JAW WAS THE WORST CASE EVER SEEN.  YOU SEE, THE SJOGRENS IS A DISEASE WHICH DEPLETES THE BODY OF FLUIDS.  MY TEETH TOTALLY GOT DESTROYED IN THE STORY HERE.  I HAD CUSTOM MADE JOINTS AS I TOLD YOU AND AS YOU SAID THE SURGERY WAS HORRENDOUS.  THE PAIN FROM IT WAS ALMOST UNBEARABLE.  I COMPARED IT TO MY OPEN HEART SURGERY OR MY BILATERAL MASTECTOMIESS.  ANYWAY, THIS MAN IS A MIRACLE MAN.  HE AND HIS FRIEND WHO ALSO WORKS THERE EVEN THOUGH HE LIVES IN PA. BUT TRAVELS.  HE IS THE PROTHEDONTIST.  I NEED ALL NEW TEETH.  I HAVE TO HAVE D20 TEETH PULLED AND THEN WHEN ALL HEALS AFTER 4-6 MONTHS.  WEARING ONLY DENTURES THAT I AM TOLD WILL SLIDE ALL OVER AND MAKE ME MISERABLE. [DID NOT KNOW THIS COULD HAPPEN ANYMORE ]  THEN I WILL GO BACK IN FOR IMPLANTS AND BRIDGES.  THERE CAN BE NO SPACE BETWEEN THE TEETH AND GUMS OR EVERYTHING WILL CORRODE AGAIN DUE TO THE SJOGRENS AND LOSS OF FLUID.  THE REGULAR TYPE TMJ SURGERY WILL NOT WORK.  ON MY RIGHT SIDE I HAD ABSOLUTELY NO JOINT AT ALL.  THE BONE GREW TOGETHER AND ADHERED ITSELF TO MY SKULL.  IT THICKENED AND OPENING WAS TOTALLY IMPOSSIBLE.  THE OTHER SIDE WAS A DROP BETTER AS YOU I HAD A JOINT DONE THROUGH OPEN JOINT SURGERY.  YOU SEE I ENDED UP WITH ARTHROSLEROTIC JOINTS WHICH MEANS TURNING TO CEMENT.  LIKE ROCK.  HE LITERALLY HAD TO CARVE AND TAKE BONE OUT AND CREATE AN AREA TO ACCEPT THE NEW CUSTOM JOINT.  HE IS A TRUE ARTIST.  YOU CAN NOT EVEN SEE THE SCARS.  BOTH SIDES OF MY FACE WERE CUT OPEN AND THE HAIR WAS SHAVED ON BOTH SIDES OF MY HEAD. 

STACY IF YOU OR ANYONE ELSE WOULD LIKE THE NAMES OF MY DOCTORS I WOULD BE MORE THAN HAPPY AND FEEL BLESSED TO PASS THEM ALONG TO HELP OTHERS.  ALL MY WORK IS A 3 YEAR PROCESS SO I AM STILL IN IT.  DEPRESSED???  I AM BUT I WORK VERY HARD EVERY DAY TO KEEP BUSY DOING WHAT MY BODY WILL ALLOW.

I AM HOMEBOUND BUT I HAVE TALENTS SO I FEEL BLESSED ON THIS ACCOUNT.

I DO HOPE YOU ARE DOING AS WELL AS POSSIBLE AND HOPE TO HEAR BACK FROM YOU SOON.

SHARON FELDMAN KNOWN AS PIA