There are a lot of new people on the board… and perhaps haven’t gotten the hang of share posts, or know where to find the information. So let’s share our stories here!
Back in 1991, while taking the kids ice-skating, a 27” diameter tree broke and fell through the windshield of my car while I was driving… crushing the right side of my face, hand (R) and leg (L). The surgeon that reconstructed my face used tiny plates and screws to account for the lost bone. He did an amazing job, but there was too much bone loss to save my TMJ.
So it began… Surgery ever 60-90 days trying to repair it until it was finally replaced for the first time in November 1993. After my first replacement, surgery started on the left side. The imbalance from the bone loss did some real damage to the other side (L). Although my original surgeon had often recommended replacing it too, I have never gotten to the point I was at with my first.
There were other consequences I dealt with from the accident, but for the most part… I was able to navigate them and thrive. Life was different. There was really no way it wouldn’t be, but you pick up the pieces and given time, adapt to the world around you. Life wasn’t pain free, but it was so much better than it was before my first replacement. You will often see me refer to this surgery as a gift… and in many ways it was. I had 2 small children that needed me to function, and this surgery gave me the opportunity to be there, and be present for them.
Fast forward to January 2005. The age of information… My prosthesis broke while I was talking on the phone one night. I sat in that moment, unable to breathe for fear that my head would explode. I went to the ER that night, and left after 5 hours of waiting to be registered. It was that busy. When I was finally able to see my doctor, it was just a fact… I needed a new prosthesis, which was fine. I have always known that it would have to be done again… they don’t last forever. I received my second implant in April of 2005.
After my surgery, I was very sick. Something wasn’t right. I was met with the usual, “You just had major surgery”, “You’re older now”, “Every surgery is different”, “I think you have the flu”… but it wasn’t going away. The weeks turned into months… and I was getting sicker. One afternoon I picked up my file (while waiting to see my doctor) and started reading. I saw something about a reaction I had to the “Silastic sheeting” (silicone) my surgeon had used back in 1993, the surgery before my joint was replaced. I asked my doctor what this meant, and I was told, “It was nothing to worry about”. He never even looked at my file to see what I was talking about, just swept it away. I dismissed what I had read, and continued to struggle.
It’s now 10 moths after surgery. It just doesn’t take this long to recover. It was really hard to just get through the day. During my next visit, my surgeon was considering trigger point injections, and said out loud… “I can’t do that.” “I don’t want to anger it!” He turned to me and told me that he was never opening that joint again. The pieces started to fall into place.
That night I hit the Internet, and there it was… my life in black and white. I was scared, shaking, trying very hard not to freak over what I was reading… As I went through the information, I remembered that just after the Silastic was implanted, one of the plates used to reconstruct my face (screwed, bone to bone) had fallen below my gum line and was removed when they removed the silicone implant (It is a 2 part procedure, the implants should only remain in the TMJ for 8-12 weeks). Could this really be the cause? I remember reading the phrase, “Node Positive, Foreign Body Giant Cell Reaction” on the pathology report in my file that day. I went into overdrive… found Stacy, and anxiously waited until my next appointment to confirm that I had seen what I was remembering.
I never told my first surgeon the information I had found on the Internet. Given what had happened in his office that day with the trigger point injections, I was sure he knew already. I wanted; no I needed him to help. Jump in. Refer me out… DO SOMETHING! When I left that day, I knew I that I was on my own.
It’s been about 15th months since I have seen my original surgeon last, 25 since my second TJR (total joint replacement). A lot has happened since then. Many doctors… many diagnosis ranging from Fibromyalgia, RSD/ CRPS (Regional Sympathetic Dystrophy/ Chronic Regional Pain Syndrome, Frey’s Syndrome, Sjogren’s, multiple chemical sensitivity disorder, IBS, etc… The list grows, the longer this goes on. The reaction is in my immune system, and it feels like everything is short-circuiting. Something as simple as weeding causes me to break out in a blistering rash.
I have a new surgeon now. He’s great. He removed the prosthesis placed in April of 2005 in March of this year, and used bone cement to close the joint space rather than wiring me. The initial plan was to have a custom, titanium joint made for me; but the allergies I have developed are too severe. He has decided to try something called “Distraction Osteogenesis”, which is essentially growing a whole new joint. How cool is that?
It’s not going to be easy. I am going to have to go on Methotrexiate to suppress my immune system… not sure if it will be pill form or IV. This reaction will eat away any new bone growth the devices encourage without it. The doctor also suggested the other metal in my body be removed… HAHAHAHA. He’s probably right, but you have no idea!
In the end, they should be able to grow enough bone to sculpt a new TMJ. My very own, new and improved Temporomandibular Joint. No more replacements every dozen years or so. Mine, mine, mine! I am quietly excited… I guess “pensive” would best describe how I am feeling. I am hopeful, scared and guarded about the whole thing. Long term, I have no clue what this will mean for me… but it’s worth a try!
Lisa
