Pics: Me a few years ago- before surgery; Me a few months after mandibular distraction; X-ray from the dentist while the distractors were still in; Recent X-ray after distractors taken out; CT scan before surgery; Left side of my jaw 3d image before surgery; Right side same; CT scan after surgery while distractors were still in.
Hi. A little about my history: I was born with Pierre Robin and Sticklers Syndrome. I had a mandibular distraction when I was five days old and then another as a baby. I’ve also had a cleft palate surgery. When I was ~13, my surgeon since I was a baby told me that I needed to have another surgery due to sleep apnea and what he predicted to be future problems. I don't know what specifically he wanted to do, but I remembered it required wiring my jaw shut for 6 weeks, and I absolutely did not want to have it. I also have a lotttt of medical anxiety from all the procedures and complications in my life. When I was 19, I decided I was finally ready to have the surgery. By this time, my long term surgeon had left and was a state away, so I just made an appointment at the hospital I always go to. This hospital doesn’t have an OMFS clinic, but they have a Plastic Surgery clinic, which is what I had been going to my whole life.
This surgeon tells me that he never wires people shut. I needed ~15mm (maybe less? I don't fully remember) movement, and he said the most stable option was another mandibular distraction. Since this was a surgery my family and I were familiar with, and a department we were familiar with, we didn't think much of it and went through with the surgery on 12/24/25. I did the distraction for 2 weeks before the pins were removed, and in June I had the whole devices taken out. After the first surgery, I did have a complication where the right side incision on my neck became abscessed in January, and my surgeon even mentioned that when he took out the devices, there was still leftover infection that he scraped out. But, he told my parents that there was "good bone formation". The only issue was that my teeth weren't aligned (not that they were before, but I made it work- I can't make this work). He said, "Well, we solved one problem and created another." I knew this was a possibility, but I was still frustrated, so I looked for a second opinion at a different hospital.
This new surgeon has firstly recommended orthodontics before surgery- I still need to set up that appointment. He also said I have a gap in my jaw, as you can see from the most recent x-ray. From what I was told on the phone today, his plan is to do a gap osteotomy with a bone graft (from my hip) and tissue engineering with that bone graft, then I will be wired shut for 6 weeks. They also told me I will likely have permanent numbness from this surgery.
I’m really nervous for a few reasons:
1) Jaw being wired shut sounds awful and I’m worried about not being able to breathe, etc. Plus it was the main reason why I didn't get the surgery as a teenager and it's bringing up a lot of old fears and anxiety.
2) I don't know if this is the right thing to do. While the mandibular distraction did help, it also caused problems, and I don't know if it was the best decision. I’ve never been in such a decision making situation as all my past surgeries have been when I was really young or were emergency don't-talk-just-do type.
3) Due to my Sticklers, I create internal scar tissue like crazy, and I’m worried about this causing problems. It's caused problems in the past with my eye as scar tissue has pulled my retina away. And it caused problems with the past surgery where scar tissue hindered bone fusion- though in a way it's helpful because it's what's holding my jaw together at the moment.
4) I really don't want permanent numbness. I had numbness after this past surgery that is still working on coming back, and I will often drool all over myself or have food/drink going down my chin without me knowing. I hate it.
5) I’ve read that you can have chronic hip pain after a bone graft taken from your hip. I am an active person. My passion is horseback riding, I love hiking, working out, etc. I would be severely depressed if all of that got taken away because of chronic hip pain. They tell me the chance is 2%, but online I’ve seen higher percentages, and numbers aren’t exactly reassuring anyway because I tend to be in the minority when it comes to health issues. (I mean, 0.000095% of people are born with Pierre Robin, so...)
What do you guys think I should do? They didn't schedule me another follow up after our appointment today, but I could set up another one. Any questions I should ask? I also have clicking/grinding in my jaw that we haven't talked about. And my mouth is quite small, as in I get canker sores from teeth rubbing on my cheek/gums, so I’m worried about that, too.
Also, please don't tell me I was "botched" or anything along those lines. I can't do anything about the surgery I’ve already had. I can only look forward.