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   Saw new TMJ doctor today - EXPENSIVE! (TMJ Disorder -TemporoMandibular Joint board)

15th April 2003
Hi webby - here's a cut and paste from something I recently sent to a doctor (sorry, it's very long):

Problem: chronic continuous severe head pain of mainly constant intensity, sometimes gets worse, but never goes away. My objective is to seek out “new” treatment until I find something that relieves the pain and other symptoms. I have seen numerous doctors, yet nobody can seem to figure out how to break the pain cycle and relieve the other symptoms. I cannot stress enough how strongly I feel about getting rid of these symptoms. I used to be able to handle the pain in earlier days when it wasn’t that bad, but it has gotten progressively worse over the years, and now I am just too overwhelmed by it. Whatever I have is not “textbook”, because so many treatments have failed.

Symptoms:
-The worst pain is behind/around my eyes, temples and deep into lower jaw. The pain is a continuous, dull, deep aching bilateral head pain, associated with tightness like a vice-grip wrapped around my entire head. On a scale of 1 to 10, the pain is a constant 7, but often a 10. There is a constant pressure associated with the pain, like sinus pressure. When I move my eyes side to side, it feels as if my eye sockets are really sore, and like my eyes are BULGING OUT.
-The second worst symptom is constantly stuffed, blocked ears/Eustachian tubes. Also intermittent high-pitched tinnitus. I can’t ever “pop” open my ears. Water gets clogged in ears after swimming (this never happened before). Intermittent hearing loss. Whenever I swallow or chew, my eardrums make a rubber-band noise like they are pressured shut.
-The third worst symptom is constant dizziness, off-balance feeling. Not vertigo like room spinning, but rather a constant, vague, dizzy feeling, foggy head feeling. Blurred vision at times.
-Sinus type pressure. One way I describe my pain is that it feels like I’m on an airplane coupled with a bad cold (i.e.-the sinus type pressure around my eyes makes it feel like my head is going to explode).
-Grating (like chunks of sand breaking-up) and clicking/popping jaw joints (mainly only noticeable when eating).
-problem swallowing, like lump in throat.
-Chronic stiffness in jaw, neck and shoulders (gravelly sounds in neck). Feels like an anchor is pulling down lower jaw.
-jaw muscles tire easily when chewing. The TM joints and jaw muscles always feel sore, but after eating, they feel VERY sore. My whole jaw just feels like it is out of whack.
-light and noise sensitivity. When talking on phone, ‘sharp’ noises really irritate my eardrums.
-occasional lightning like shooting pains through jaw and head.
-I can’t find my bite anymore (this began after wearing the ARS splint, pre-splint I had a “normal-bite”). Seems like jaw deviates to side upon opening. Although my jaw can open wide, it feels as if I’m fighting against really tight muscles when opening. Feels like all the muscles are swollen or something is all jammed up in the lower jaw.

In addition, due to the chronic pain for so long, I am now constantly fatigued, depressed, agitated, tired, no concentration, no patience, short-tempered, withdrawn.

History:
 No pain or any symptoms prior to 1988.
 In 1988, headaches began after impacted third molars removed. Bottoms removed first, tops a few months later. I was put under with Demerol each time, and my jaw was really stretched wide during operations. Theory is that the ligaments/muscles may have been severely damaged by the jaw being stretched wide for prolonged period?
 Subsequently, I saw many neurologists, numerous ENTs, neuro-otologist, neuro-ophthalmologist, ophthalmologists, dentists, psychologist etc. CAT scans, MRIs, x-rays, EEGs, Sinus scans, other tests, all normal.
 During late 80’s early 90’s, I was in a minor motorcycle accident; minor auto accident (rear-ended) and got a minor concussion playing football. I didn’t notice any long-lasting problems as a direct result of these traumas, however, doctors think that the minor whiplash type injuries further aggravated TMJ dysfunction, or Myofascial Pain Dysfunction, and further enhanced the pain and symptoms.
 Around 1991, I wore an Anterior Repositioning Splint at night only (I attached a picture of the type of splint I wore). The splint permanently moved my lower jaw forward, however I didn’t notice any pain relief or ear improvement. FYI - I wore braces in junior high, and was supposed to wear a palatal-expander subsequently, but never did.
 2000 – deviated septum fixed.
 2001 – tried NTI splint - no help. Problem is, I don’t really clench or grind anyway.
 2001 - Tubes put in ears - no help. ENTs say I definitely have Eustachian tube dysfunction, but they can’t find anything wrong. They say it must be TMD related. Tried all sorts of allergy and sinus meds – no help.
 2001 – I tried sarapin injections into jaw and temples – no help.
 4/02 – I tried 3 different neuromuscular splints (on lower teeth) during the last year - no help. I tried EMG biofeedback and TENS – no help. The Computerized Jaw Tracking instrumentation apparently found the correct, most-relaxed bite for me, but the splints did not help (one reason they didn’t help may be because I couldn’t wear them at work or while eating, and I believe since I have been in pain so long, I need a comfortable splint to wear 24/7).
 5/02 – I tried chiropractic (neck) adjustments – no help. He really just twisted my neck, and then put heat on it.
 8/02 to current - I am seeing a new neurologist. We have tried cranial-manipulation therapy – no help. MRI (cervical) and CAT scans (head) apparently normal again. Tried BOTOX injections – no help. Relaxation/stress reduction therapies-no help either.
 10/02 – I tried prolotherapy injections into TMJs – no help.
 12/02 – neurologist ordered an MRI of TMJs. However, Dr. Fraschetti looked at the MRI, and didn’t think it was taken correctly, and thus didn’t provide any real good information.

Some of the medicines I have used:
-flexeril, valium, skelaxin, zanaflex
-vioxx, naproxen, tylenol-codeine, motrin, excedrin, midrin, vicodin, bextra, percoset, oxycontin
-elavil, pamelor
-depakote
-xanax, klonepin
-numerous sinus and allergy pills and sprays
-inderal, diamox, hydrochlorothiazide
-Currently on seroquel

Currently:
-seeing a neurologist – trying new med (seroquel). Also, trying medical acupuncture treatments.
-Sleep apnea test scheduled for 4/15.
-I have a new appt. scheduled near the end of April with a psychiatrist who specializes in chronic pain and depression. Because of the chronic pain, I am really severely depressed these days. Although, I am good at “hiding” the depression (my neurologist says this is common).
-We may schedule therapy using the St. John’s Neuromuscular Massage Therapy treatment program.
-We may refer to a chronic pain management clinic, but will wait until I see psychiatrist.

Moving forward:
My objective is to treat the cause of my symptoms, not mask the symptoms with pain-killers etc. I don’t take painkillers anymore because they never really helped, and I don’t want to get rebound headaches. It should be known that at the onset of my symptoms in 1988, they were not that severe or numerous, but have gradually gotten worse and more numerous each and every year. I was able to handle the pain for a long while, but nowadays my work and everyday life is being far too impacted.

I truly believe that I just haven’t found the correct treatment program yet. According to the ENTs I have seen, they think the muscles around my TMJs and Eustachian tubes are constantly tight, thus preventing the tubes from opening and relieving ear pressure. They think the lateral and/or medial pterygoid gets tight and impacts the tensor veli palatini muscle, or something similar, however they say I need to treat the TMJ disorder to alleviate the ear symptoms. Every time I swallow I hear a noise in my eardrums like a rubber band contacting, like the eardrums can’t ever pop open (something has to be swollen around the ear area that the ENTs just can’t see). Also, it should be noted that the ear symptoms weren’t noticeable until about 5 years after the headaches began. At first, I noticed that when I swam, water would get stuck in my ears, and not drain at all (extremely irritating and painful). This NEVER used to be the case, in fact I was a big swimmer in high school, and never had any ear problems before. I ABSOLUTELY CANNOT BELIEVE NOBODY CAN FIGURE OUT THE EAR PROBLEMS. I thought moving my jaw down and forward would decompress all the nerve pressure in that area and relieve the ear problems and constant dizziness, but it hasn’t even one iota.

I do not clench or grind during the day, and since the pain is not the worst when I wake, I don’t think I clench or grind at night either. During the day, I keep my lips together, but my teeth apart. However, I still have constant jaw and head pain and tightness. It seems as if every muscle in my entire scalp is TIGHT, however I cannot understand why muscle relaxers do not help at all. The Computerized Jaw Tracking Instrumentation indicated my muscles were in the correct position, but why all the pain then? I do not understand why this is so. Way back in the early 90’s, I used to open my mouth really wide (yawning, eating etc.) and from what I know now, I think I was really over-stretching the jaw ligaments. Sometimes, the splints would make me clench when wearing them. It baffles that x-rays/images have not shown more damage to my TMJs, since they seem sore all the time. It’s difficult to believe that only muscles can cause all this pain, but maybe so (again though, why don’t muscle relaxers help at all?). THE PAIN BEHIND/AROUND MY EYES IS KILLER-what about this sphenomandibularis muscle causing the eye pain? Is the lateral pterygoid muscle causing the sinus type pain do to spasms? My neurologist thinks that my trigeminal nerve is being compressed by the surrounding muscles, and thus the nerve endings are sending the message of constant pain everywhere. Although I don’t seem to have “active” trigger points, what about latent ones? Any area that can refer pain to behind the eyes and to the temples should definitely be explored!

It’s possible that I need a different type of splint that I can wear 24/7, including while eating, in order to decompress the muscles near the TMJs. The splints I have worn so far I found too difficult to wear while eating, and too cumbersome to wear at work (I am in just way too many meetings to wear a splint that covers all of my bottom teeth, can’t talk right etc). I think I could wear one of the splints for 24/7 that covers only the back bottom molars. I have read that some people have worn this splint 24/7 for 1 or 2 years ever before even seeing any improvement. Maybe I fall in that category. Bottom line – I can’t wear the splints I have now while eating or while at work. I need a different style splint (heck, I wonder if a splint is even the correct treatment, but what else is there, besides invasive things).

I have never tried physical therapy or neuromuscular massage therapy. It may well be that I have Myofascial Pain Dysfunction, that my muscles have just been in a constant chronic spasm for a very long time, and Myofascial release may provide relief. A big plus is that my insurance covers a MPD diagnosis (my TMD benefit is all used up). I think this would be worth my time to try.

Dr. Fraschetti indicated that my tomograms and x-rays from last year weren’t inclusive of everything he takes during his tomo/x-ray testing. He said there are some other scans that really need to be taken in order to see exactly what’s going on in my TMJs (I can’t remember what views were missing, but he said they were very important). He said after he looks at these additional views, he would have a better handle on what’s going on.

A theory is that there is not enough height in the back of my mouth, that all muscles are in constant spasm, and referring pain to behind eyes and blocking ears.

thanks for reading this, and sorry about the length.
take care,
mbr


I am just baffled that splints have not worked for me. My ears are so blocked, pressured, fullness, that it feels as if my ear drums or eustachian tubes are swollen shut at times. My discs seem like they are OK according to x-rays, but something is off.
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