Jaw Surgery?

 Jaw Surgery?

 

    When I met with the surgeon, he reviewed my films with my mother and me and explained all the abnormalities. He asked if I had taken bisphosphonates. I said yes. He said I had some chipped bone that bisphosphonates were notorious for causing. He explained to me that this surgery would be of great benefit to me and that although the pain I had could come and go, surgery was my best option. I really saw no other choice as my jaw was constantly dislocating and causing me both pain, and an inability to eat. Once we agreed to the surgery, he took measurements of my mouth. These measurements would be used to make custom titanium plates that would attach to the new jaw joint. The plates took 3 months to be completed. The surgery was quite costly, $40,000 out of pocket. The jaw joints would be covered under insurance and cost almost the same amount as the surgery itself. I had decided to write my whole CF journey with the intention of submitting it to several CF organizations in hopes of gaining some financial assistance. (Instead I have turned it into a blog). I was quite uneasy about the surgery as it was a very major surgery. The tops of my bottom jaw were to be cut off and the titanium joints would be fastened to them. I was already prone to jaw necrosis due to the steroids I need to take indefinitely, and now I’d be at an even higher risk as the blood supply would be disrupted. Zometa was going to be held as it would not be helpful to take while undergoing such a surgery. I had joined an online TMJ jaw joint group and all of the posts referenced the severity of the surgery. Many people had serious complications from their surgery and the outcomes weren’t always ideal. Many people had misaligned jaws. There was a lot of dental work that would need to be done after the surgery as well to make sure everything aligned properly including needing braces or Invisalign. I was advised that this procedure was only to be done when there was absolutely no other option. On top of that, I was noticing that my jaw was not dislocating quite as often. To quell my fears, I had a total of 3 zoom sessions with the surgeon. He simply told me, in his opinion, I would benefit greatly from the surgery and he believed I would do very well. Ultimately though, it was up to me to decide. The surgery date was set for Halloween 2023. As the date grew closer, so did my trepidation. My jaw hadn’t been giving me problems for a solid two months. This made me very leery of getting the surgery. My intuition kept telling me something wasn’t right. I knew in my heart that the bone infusion drug had caused this situation in the first place and now I realized, as the drug was leaving my system, a few months shy of a year, so too was the irritation it must’ve been causing to my jaw joint. No doubt, my jaw joint had damage, but perhaps it didn’t warrant a surgery after all. I recently (6 months after this situation) met someone who was taking a medicine that she was allergic to and her jaw started to dislocate. Medicine can indeed cause strange side effects. This particular medicine I was taking may have also caused some damage as a known, listed side effect is jaw necrosis. Ultimately, I decided to listen to my gut, and I canceled the surgery. Money is still tied up, as fees had to be paid upfront, and the jaw joints were made and now may not be covered under insurance as I did not go through with the surgery. Besides that, the surgeon hasn't refunded all the money we gave for the surgery that never happened. I'm just thankful that I listened to my intuition and didn't go through with a very risky surgery as my jaw is fine now.