In 2005, I had a bilateral total joint replacement of my TMJ's.
Since the surgery, I've had hearing loss and vision loss. I've also had severe bone pain in the mandibular bone and the bone behind my ear. The pain instantly draws me to tears. I've passed out from the pain numerous times.
I've been to neurologists, pain management doctors, oral surgeons, psychologist, general practitioners. I've had countless bite splints, physical therapy, meds, laser accupuncture, massage...to name a few.
The surgeon feels nothing is wrong..but, he concedes that I am in severe pain. He actually admitted that it could be phantom pain. His only advice is that I keep going to my pain doctor. I've been on everything from ativan to zanaflex. I am currently on roxicodone.
The pain is progressively getting worse. One problem that I have is doctors are unwilling to see me, because of the replacement surgery. Yet, the pain is breaking me...I am completely exhausted.
Prior to the replacement surgery, I had 14 surgeries on my TMJ (as a teenager). I hadn't had TMJ surgery for 10 years. I was injured, which was one reason for the replacement surgery. The second reason I had the surgery was because of advanced avascular necrosis of my TMJ's.
One question I have is this, "Is it possible that avascular necrosis spreads...even though the joint was removed during the replacement surgery"?
The second question I have is this, "Is it possible that (from replacement surgery) a person could have a bone infection"? What would be the treatment for jaw bone infection? What type of doctor would you go to?
I am still trying to get into a doctor. But, I am having major difficulties, because they just don't want to touch me.
I don't want to be on pain meds, forever (as I am only 34). But, I also don't know what else to do with the pain. The surgeon who did the replacement won't consider doing 'exploratory surgery' or a bone biopsy for a year.
You condition sounds very distress but unfortunately I do not have any advice other than to continue to follow with your surgeon.
There are some Oral and Maxillofacial Surgeons who deal with complete TMJ replacement, however I am not one of them.
There is an Oral Surgeon in Florida by the name Robert Marx and one in Maryland named Robert Ord who may be able to help.
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I believe i have the same or simliar thing as johanna. I have pain all over the side of my face from the tmj area to the bottom of my cheek and it cracks...I think its NICO but I am not sure. I need a bone biopsy to confirm. I had a dislocated jaw for 5 years and then it was relocated. I am only 24 and have to take ativan to control the pain and nerve pain that also goes along with it sometimes. Lack of blood flow causes necrosis of the bone and the only way to cure it would be to remove the area with bone curettage which I am not sure is done at this time. Possibly taking out all the bone and replacing it with an artificial might work but the area involved is very sensitive as there are nerve endings everywhere. I am still researching a way to solve this right now. I have bone snaps all over which is probably an indication of cavitations of the bones.
I, too, have had 14 jaw surgeries and surgical procedures on my TMJ. In July, I had one of my metal joints replaced. I feel for you and for what you have been going through all these years. I can certainly relate with you and the debilitating pain you've been experiencing. I have a suggestion for you. Please consider contacting a neuromuscular dentist in your area that treats TMJ/TMD patients. When someone suggested this to me, after 12 surgeries, I thought, "What could a dentist do for me at this point?" However, out of desperation I saw someone. Even though I would swear the pain I feel is deep, and bone related, this doctor has helped me tremendously. He explained that much of my pain is really muscular. Since treating me with a home TENS unit, as well as correcting my bite with orthodontics, I am feeling better than I have in 11 years! At this point, ...what have you got to lose? It might just help.
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