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RealityTx a.k.a. Steven - TMD
My name is Steven and am a licensed Counselor. My first Masters was in Physiological Psychology with a focus on pain management. My second Masters was inCounseling with a focus on addictions. I am certified as a Biofeedback Therapist, Hypnotherapist and faculty with the Institute of Reality Therapy. Unfortunately my life came to a halt after succumbing to TMJ surgery to avoid medication. The surgery has led to further failed surgeries and a degenerative process of pain and dysfunction. I am now 100 percent disabled and had to close a thriving practice that I enjoyed very much.
Having surgery to avoid medication completely backfired for me.Let me tell you some about my history. In 1986 I began having moderate pain in my neck and TMJ areas. At the time I was working as a biofeedback therapist and had bought into the whole don't use medication but go natural theme of the profession. I felt lucky to have access to one of the best facilities/equipment in the country and freely utilized them on a nightly basis after hours. It was obvious my TMJ's were tonic with a 4:1 imbalance reading with the electromyography. I tried to retrain those muscles to no avail.
I was however able to retrain other muscles, such as my frontalis to levels that textbooks said only yogi's could achieve! I also taught myself how to effect my own blood pressure, galvanic skin response a and perephereal body temperature. For example through relaxation I could raise the temperature of my hand from a resting 88 degrees skin temp to 94 degrees in 5 minutes and keep the other hand at the same temperature. Or change my blood pressure from a normal of 120 /80 to 90/60 in the same amount of time. Unfortunately the TMJ muscles were the one thing that would not change. Biofeedback's purpose for me was only to diagnose there was an obvious problem, but even then not knowing the etiology.
Still working at this biofeedback center I got a referral to a nuero to do a cat scan on my TMJ's. Instead he did a cat scan on the posterior of my cerebellum and misdiagnosed a non-existent brain tumor. Being told I had a brain tumor I thought this was the reason for my facial pain and immediately was admitted into the hospital for brain surgery the following day. That night they medicated me heavily with pre-op meds in addition to high amounts of Phenobarbital. The also did a myleogram that afternoon.
Being the typical therapist (translate; difficult patient) I asked what was the Phenobarbital for. They responded with "because you are epileptic aren't you?" Of course I wasn't and they had given me the wrong meds. That night they woke me from a drugged sleep to sign consent to do the surgery the next day. By the next morning, thankfully , a sense of rebelliousness came over me and I told the doctor I was not going through with the surgery. The said I had already consented and was only nervous. I calmly said I consented under duress of inappropriate meds and if they persisted I would call a lawyer to check me out AMA. Of course we didn't get along to well after that..ha ha.
The left a leak in my spine from the myelogram making it impossible to be horizontal without throwing up and refused to do a blood patch for 8 days. During that time they realized from the myelogram results that after all I didn't have a tumor but a cyst that had probably been there since birth and was not related to my pain and was inoperable.I guess a man has intuitive powers too and was thankful I had refused the surgery for the tumor they saw on the cat scan that was not even there. During those eight days of course they did everything to cover there own mistakes and blame the patient...tried to call me depressed, etc. Luckily the psychiatrist they brought in was a colleague and he new what was up.
Once they did the blood patch and could walk after eight days I walked out of that hospital never to return with the business office saying I needed to sign forms before I left. of course I just left. And was glad to be alive brain intact. However with my TMJ still in pain and without a cat scan of the joint. Looking back one thing I could of learned among many things there was that my TMJ pain was greatly diminished during the stay and was probably due to 2400 mg of motrin given to me daily. But then I went back to graduate school, living the medication free life, TMJ pain ongoing.
From 1986 to 1987. I avoided meds and doctors at all cost. If it wasn't herbal or a vitamin I didn't take it. Then in 1987 I had my wisdom teeth removed, or what I thought. When I went to a regular dentist for a check-up he said, " you have an impacted wisdom tooth" . I thought that couldn't be as I had just had them out a matter of months ago. It turns out the oral surgeon removed the perfectly healthy molar beside the impacted tooth and left the abscessed tooth there to fester. Being the typical poor graduate student I returned to that oral surgeon and have him remove the right tooth. I also inferred his medical mistake and he quickly raved about how "I was going to sue him". I just told him I wanted a referral letter to the best TMJ doctor in the state. So he did that.
In December of 1987 I had my first cat scan of my TMJ. How validating it was to have a team of surgeons and a prestigious hospital say, "of course you are in pain in your jaw, your meniscus is impacted, etc." The scheduled surgery for February of 1988. The procedure that is listed in the operating note is ,"Bilateral TMJ eminectomy and posterior disk plication". No where in the consent or operating notes was the use of silastic or any implant ever mentioned to me. Turns out 4-5 weeks later I rejected implant material I didn't even know I had. I only recently found out it was silastic by requesting my notes and seeing its description on the emergency room note signed by the attending surgeon. It was left off the operating notes, surgical notes, and all the outpatient notes from the rejection were destroyed. I do have that emergency room note and the painful memory of it.
Of course once again I wanted to avoid Md.'s, hospitals, etc. and went back to graduate school. (Recently I have discovered an article by my primary surgeon describing the same surgery on primates during the same year using silastic. He seemed to report only minimal problems with the short term use of silastic although admitted to long term ankylosis, etc in long term use. It makes me wonder why he didn't mention he was doing the same to humans and that I did have problems with it. Serious problems.)
At school I did everything alternative within reason to alleviate pain and encourage health. Vitamins, herbs, vegetarianism, acupuncture chiropractic, massage, naturopathy, more biofeedback/hypnosis, floatation tanks etc. Denial within reason given my history already with two hospital experiences seemed the best option. I graduated with honors, got married, had a child, took over a psychiatric hospital wing and eventually opened a successful private practice. Unfortunately by 1994 the pain continued to worsen and I could no longer deny it's obvious limitation on talking, eating, sleep, concentration,etc. and agreed to once again seek a medical consult.
Being in a metropolitan area by this time I asked around on who was the best TMJ doc in town and made an appointment with them. Ironically my old doctor who had been the chief oral surgeon at a teaching hospital was now a partner of his. This new doc felt my left TMJ( the side that rejected the implant) was filled with scar tissue. He ordered an MRI. The MRI stated," mild irregularity of the temporal eminence and drilling of the surface is questioned and this appears to be adherent to the superior surface and perforation of the meniscal tissue is questioned" also the study was limited by "significant metal signal void artifacts noted laterally" The surgeon then concluded," disruption the disc material in the left TMJ joint, degenerative changes of the condylar head and distinct degenerative changes of the fossa surface and evidence of effusion .
He scheduled me for left TMJ arthroscopy and a probability of reconstruction with an auricular graft due to some erosive changes of the posterior slope. Diagnoses was fibrous ankylosis of the left TMJ, degenerative joint disease of the l.TMJ, complete adhesion of the disc to the bony fossa and a small perforation of the disc in the left TMJ and degenerative changes to the disc. Oddly enough my prior surgery in 1988 would not have reason that I know of to show any drilling or metal artifacts...then again they didn't tell me about the silastic either. So who knows what is in there or what has been done Unfortunately pain worsened in 1995 and was limiting my practice.
In 1996 without any further MRI or cat scan he diagnosed me with left coronoid process impingement on the zygomatic arch and chronic temproalis muscle spasm. I underwent a left intra oral coronoid resection at that time. From that point on I have been in severe pain and have been disabled. Since the first surgery of 1988 and the ensuing rejecting of the silastic ( I found out it was silastic when I requested records in 1996 and found it on my emergency room note) I didn't consent to any implant in 88 and have increased pain on my left TMJ with each year. Speech, eating both exacerbate the pain. I have jaw pain, pain on a molar(capped), neck pain temporalis spasm/pain and regular nausea from the extremes the pain goes through. Ironically I had surgery to avoid medicine but now have to take a number of medications.I wouldn't even take an aspirin prior to surgery. I should have not listened to these docs that said they could fix me, I would have been better off.
My most current MRI(1998) shows; degenerative changes of the left mandibular condyle with osteophytic spur and some erosion and degenerative arthritis of the left TMJ typical of a multiple surgeried joint, arthitis at the base of skull, arachnoid cerebellar cyst, metal in the joint no surgeon admits to putting there, etc. I am being maintained by a wonderful osteopath who I think if I had sought prior to 1988 and avoided surgery I wouldn't be so limited in function and have so much pain. I also have Dr. Jim Boyd's new NTI and have hopes of it slowing down this degenerative process (http://www.drjimboyd.com/)
I do not want any more surgery. I do however want to ease this pain without medicine of possible still. My bite is now way off. My teeth touch in the front right incisors. My left molar doesn't even touch. only have four molars left and the lower left molar is a cap. It throbs on a daily basis long with retro molar pain. When I have severe flares surprisingly Imitrex will cease the flare, stop the nausea and bring me back to my normal excruciating pain. Pain is daily and limits speech, eating and every aspect of life. After reading this long history do any of you, patients, docs, anyone have comments, suggestions to improve my health ? I am listening.
I wish I had refused surgery and sought medication at the time. But I got surgery to avoid meds as I said. That unfortunately has tragically backfired. I miss my practice, the recognition of helping others.I do find happiness and appreciate life despite The pain and depression is not a factor. I have learned now through 12 years of this pain to have some fun, limited as it maybe,anyway. Learning to laugh while throwing up is a skill I never thought I would be proud of. Maybe I should thank my surgeons and schooling for that....ha ha.
I am so glad I found a community of people to share this with although I wish we all were better...such a mixed blessing...
Steven a.k.a. "Realitytx" ©1999
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