The TMJ Association - changing the face of TMJ

TMJ Resources - Our Family - Patient Talk

Bobbi

I came across the association web site last night. I registered and was relieved to find that there is an association out there. I've never read anything quite so "right on" for me as the article "Intended or Unintended, the Unforgivable Injury”. Thank you for posting it. I want to have my family, dentist, doctor, psychologist and many others read this. Mostly, I want to be able read it to reassure me that all I have gone through for the last 5+ years wasn't all in my mind. I am now a disabled Registered Nurse after working for 27 years. I definitely understand the value of advocacy from my years in nursing. My symptoms have even resulted in a 3 level fusion of the c-spine. That was 5 years ago and I have only gotten worse and worse. Enough of that. I feel there is now some hope after finding your site.

Once upon a time, about 6 years ago, headaches, that I had gotten 2 to 4 a month, lasting a day, for years, changed in character. These different headaches were absolutely incapacitating lasting 4 to 5 days and then only backing off slightly. Migraines were the diagnosis being caused by cervical disc protrusions. Next came a 3 level anterior cervical fusion with orion plate. The headaches remained and worsened as did the left side head pain, left side head severe pain and tenderness, occipital pain and burning. The neck pain, shoulder and scapular pain were also tremendous and unremitting. Some of the numbness in the left arm improved but other symptoms in the same arm worsened and changed.

Shoulder surgery came next as the possible culprit; a supra-scapular nerve release was done. Same outcome, only minor improvement by letting my left shoulder drop down from where it had been pulled in the direction of my ear.

I have always been a very strong and independent person. This is so far from the truth anymore that I hardly recognize myself as if that person never existed.

During this past year it became very apparent to me that I was having trouble swallowing chewing, severe grinding in the ear area on the left as well as the right. Over the years I have just become more and more passive in response to peoples reactions. I don't want to bother anyone with these seemingly ridiculous symptoms no one has any real idea of their origin. My treating MD tried to change me to stronger meds but I get nauseous and itchy with morphine. I thing he thought I was faking. After all, who wouldn't want morphine patches to wear!!

I am still shocked at what he did next and it's embarrassing to speak about it. He gave me a prescription for a "new pain med" (naltrexone) he thought would help. As a nurse I was familiar with it and to be sure I was correct I went to the PDR site on the web. Sure enough it was a med to withdraw someone from a narcotic overdose. I decided not to take it. I felt he just didn't understand. After weeks of unremitting agony using Darvocet N and Vicodin alternately he asked me if I had started the new drug. I was embarrassed to tell him I had not. I was so desperate for help I said I had and that it didn't work. He said double up on it. I did not know what to do. I desperately wanted relief. I hated being so helpless and disgusting that I went ahead and took one. I thought he must know something I didn't.

Within an hour I was having severe narcotic withdrawal. Nausea, vomiting, uncontrollable yawning and stretching and seizure like shaking with severe all over burning and pain especially in any of the areas I always had pain. I wanted to die.

When I tried to call the MD he said it would just wear off. I was so embarrassed by my predicament that I just figured that if I died, I died. To make a long story short. My husband came home and took me to the ER. They were suspicious as to why my MD gave me such a drug. I was treated as if I was a street addict. I tried to tell them I was a chronic pain patient and bah, blah, blah. After 8 hours there and IV treatment with medication I was released. I obtained a copy of the ER record (an old nurses habit) weeks later it confirmed my thoughts. The diagnosis read opiate withdrawal with out an explanation of the drug that had potentiated it. Also, my symptoms were listed as voluntary in nature.

It's very apparent now that 99% of my symptoms are attributed to my TMJ. This has been confirmed in my mind by demanding spinal studies, MRI and Myleogram, to rule out any significant neck involvement. Additionally, demanding X-rays and MRI of my jaw have shown severe degeneration and dislocation on both sides. The oral surgeons in my area, due to the complicated nature and history of my pain want to refer me to XXX for a multidisciplinary eval. I feel it all starting over. I trust no one but yet I cannot continue to live like this. I've been through all this before when my neck pain was really TMJ the whole time.

I've heard about people searching the web for information and finding a wonderful source of help and understanding. Thank you for being there last night!!!!