Hello again ... deep breath ... as some of you know, I had a maxilla-only revision last October. It was my third osteotomy on the maxilla, and my sixth surgery in six years. There was a lot of discussion during the planning of this single-jaw revision surgery about whether we should be re-doing both jaws (bi-max) or just a single-jaw revision.
One of my main concerns through all of these revisions has been the fact that I have never experienced lip-competency, and that my mandible continues to collapse open on my airway when I try to lie down to sleep (which I cannot live with). After six maxfac surgeries, I continue to sleep propped upright with pillows, and I have to use strong surgical tape to pull my throat skin up an over my chin to keep my airways open when I recline to sleep).
As the planning of my last revision involved advancement of the maxilla in order to perform a cw rotation (to replace the mid-face elevation lost during the last surgery), I was very concerned at the time that this may make the relationship between my jaws even worse (my surgeon had previously acknowledged that my mandible was never advanced adequately in my original bi-max surgery). I raised this concern many times and asked if I should also have a bsso as part of my revision. My instinct was that a bi-max was required ... however, whenever I raised this possibility, my surgeon would agree in theory, but panic and tell me that there was "not enough bone-stock" to perform another bsso, that my jaw would "shatter", and that the whole idea of trying to do another cut to my mandible "terrified" him made him "very nervous". During our conversations he would focus on the possibility of bad-splits and non-unions and would then tell me that more surgery on the mandible was not really an option. A week before my surgery, he finally told me it was "off the table".
When I think back to how I made my decision to go with a single-jaw revision last time, I realize it was strongly influenced by my surgeons acute anxiety about all the things that could go wrong. Whilst it's true that I was somewhat ambivalent about the thought of another bsso - it was his palpable fear that seemed to be driving the decision making process for both of us until the decision was finally out of my hands. In retrospect, I wish he had been more optimistic and encouraged me in the direction of the surgical response that would have been most likely to resolve all my functional issues.
Forward to today ... it's now been one year ... my sleep apnea is worse than it's ever been. I have no lip competency ... not even when upright and walking and certainly not when lying down. It is patently clear to me that advancing the maxilla to perform the cw rotation to elevate the mid-face and improve tooth-show - in the absence of mandible advancement - was a really terrible idea. I may not look like a 90 year old crone with a collapsed mid-face anymore, but now I can't keep my mouth closed, and I still can't get any sleep. I have been asking for a meeting with my surgeon to discuss revision, but my calls and emails have been ignored. Like many patients with unsuccessful outcomes, I have become persona non-grata!
In the absence of further surgery, my only option now (after 6 years and 6 surgeries!!!) is to get a MAS - however, I have an acrylic allergy - which is why I had the damn surgery in the first place!
In desperation, I went to see a senior Professor a couple of weeks ago to have my case reviewed privately by the best surgeon I could find. He took one look at my radiology history and noted the disaster before him! He examined me and told me he was pretty shocked at the clinical decisions made and surgeries I have had to date. He told me flatly that he could see just by looking at me that the surgeries had been a failure as they had not fixed my breathing issues and that I needed to go back to the beginning and re bi-max!
I told him how much effort and planning had gone into the last surgery a year ago on my maxilla, and how complicated my issues of symmetry had been to rectify, and that I could not face further surgery on the maxilla. He said he understood, and said that - as a second option - I could simply bring the mandible forward (there is loads of room to do this dentally as there is a fair amount of overbite).
I told him this was all moot because my current surgeon had told me that I didn't have enough bone-stock to re-do the bsso.
He said "rubbish, you have more than enough bone"!
I told him that my current surgeon had told me it was way too dangerous, and that there was the likelihood of bad split and non-union.
He said "rubbish, it sounds like he just doesn't want to do it"!
I told him I was afraid of permanent nerve damage as I was still quite numb from the last surgery and asked him if another surgery would make that worse?
He said "not if it's done properly"!
I told him that everything he was saying was the opposite of what my current surgeon had been telling me for the last five years. I told him that I wished he had done my original surgery. I told him I was feeling angry and litigious.
He said "I don't blame you!"
So I went to see my current surgeons Registrar and told him that I had gone to get a second-opinion. I told him that if they did not speak to me about the possibility of revision, I would be forced to take legal action.
Suddenly this week I am contacted by the clinic and asked to get new radiology because a revision is suddenly "back on the table"! I asked them what had changed, they said they had reviewed my case and could see that further surgery was required.
Anyway, now I am left with a decision to make. I have sustained a numb lower lip and chin from the last bsso 6 years ago. It has improved a lot in six years, but it still bothers me. I have to weigh that up against being able to keep my mouth close, and being able to breathe when I lie down to sleep at night - a decision I wouldn't have to be making now if I'd been adequately advanced in the first place
Anyway, any help, guidance suggestions would be appreciated.
In particular, are there any precautions I can take to avoid further nerve damage with a bsso revision?
