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Progressive ICR/DJD with post orthognatic surgery relapse (14 years later) and recurrent anterior apertognathia.

Looking to get some feedback based on what I have been told has been a 'challenging and unusual' case/ condition- all beginning at age 8. I research and watch videos of other TMJ cases, surgeries, etc, and try to see where I fit, the post-op/relapse cases- ages, gender, or if and how the pathology relates to the relapse. It has been 14 years since my orthognatic procedure. I should mention that the surgeon who performed the procedure died three months after my surgery- so I would have returned to him to get his oppinion- that alone was quite an ordeal, knowing I was his last surgery, not wanting to accept that it was not a complete success. The biggest issue is accepting that the 15.5 hours of being put under anesthesia, 14 years ago, for a routine lefort one BSSO with sliding genioplasty and multi piece lefort 1 osteomy, was that it was in fact not a success. Relapse occured a little over a year later, my open bite returned before I could even chew food again. The procedure was orginally supposed to have taken 8 hours. Mine took 15.5. I was placed in ICU for recovery. Insurance in 02 didn't really care about any of that, they gave me two nights. One was counting the surgery itself, the second where ever recovery was, ICU or a regular recovery room was all the same to them. UNfortunately, it resulted in 48 ours later, getting an infection in the LR mandible, the size of an orange, almost grapefruit. Since the surgery was performed in a city three hours away, my family was told that it would be best to take the three hour drive, on a sunday night. That three hour drive resulted in an emergency drainage procedure, in his office. Seeing that metal syringe, larger than a turkey baster, and the Dr with his mask, the nurse holding me down- saying- no time to put her under- with the wired jaw and infection getting larger and cutting my air, potential to get physically ill, and being told all of this- if i get sick, physically I could choke..'.we needed to move quickily'...WE? I thought? Move me quickily to the hospital? To an IV? I learned that it IS in fact possible to screa with a wired jaw. My mother had to be taken to the parking lot ( it was an in office procedure) and said she could hear me scream from outside. It had been three days after the initial surgery, so my body was not as strong as I would have liked it to be- and I was able to pass out after he drained a second syringe. Then, of course the ambulance came and I was taken to the hospital, admitted and three more procedures and it was standard after that. If you are able adapt well, use logic and find out that it IS possible to scream loud enough to be heard in a parking out outside of a concrete buidling with your jaws wired shut, you tell yourself that the results will be worth it.
You tell yourself that there are no 'opera degrees' just for being a good sport and showing up, being 'brave'. I showed up back in vocal master class, two months later- jaw wired, still learning the music- until they told me as kindly as possible that I was not longer able to keep my vocal scholarship since I was unable to perform.
I took on jobs where I was working up 18 hours, and taught myself trades that I had no degree in- how to be a pastry chef or chef- and not one drug was used for pain, the pain of my failure, the failure of the surgery, could not logically be taken away with a drug.
Forward to two weeks ago, finally had the consult with a kind, truly brilliant and exceptional oral surgeon, who knew my case- The 3d imaging showed the relapse, he was able to explain why I was feeling pain just trying to hold my head up, feeling like i'm being punched in the back of the head over and over. The case files and Dr's 'dissertation' introduction letters go on and on and I spend most of my time googling words and translating what they are saying. Until now, I realize that enough people are struggling and dealing with their own version of this and maybe I can get some feedback.
Here is what you may or may not consider as relevant background. My grandfather was an orthodontist, retired- and when I was at the age of 8- he ordered my 'premolar' bicuspids ( 4 of them) removed before they had 'dropped'. I assumed that this was because this is normal, and was told it was to avoid crowding. I still have no idea how he would know there would be crowding when I stiill had not lost my baby teeth, and was not experiencing any pain, anything out of the ordinary. I have no idea why he ordered extracted the 'baby teeth' as well, which I was told was getting me 'ahead of the game' and at that age. This was to prepare me for braces, which in 4th grade, about two years after the extractions, I was noticing that my two front teeth had grown in with a space in the middle, and constantly felt a pulling, almost like my teeth and jaw were at war. This was before they even put the braces on. I was a 'journal writer', at that age if that hasn't become too obvious yet- so, I was writing about what I was fighting against, not knowing what it was,who to talk to or what to say- because you are dealing with your own family- 'perfectionists', as I'm sure a person has to sort of be to go into orthodontics. I was always feeling pain- and told it was 'bruxism', at age 7, shortly after the 'extractions'. but again- at that age, they think- it's adolescence, get the braces on her- and well, the rest is text book. I went along with it too, wanting relief, wanting to be normal, and not to be a burden, because when I say it was pain, it was always the type where you just want to tie a belt around your forehead and keep pulling it tight until it conteracts the 'pressure' feeling. Yes, we did the neurologist,psychologist, spirituologist, and of course being that my grandfather was a retired orthodontist, one of my greatest challenges, which could be slightly humourous looking back- was that HE wanted to tell the orthodontists and surgeons what to do and -HIS way, even though he sought out their services. Meanwhile, realizing I hadn't even gone through my first 'official' growth as a little kid- I went through all of that with braces...held me back, held processes back. Delayed processes. You see the case I am building up. - I thought, well- it does seem quite logical that physiological natural growth processes will occur and to try to 'stabilize' them, as orthdontists were always telling me- just seemed strange- and my other friends were not experiencing this, most got their braces on in middle school or highschool, and definately didn't go through 8 years, including getting them back on again for the surgery. But who listens to a 7,8,9,10,11,12 year old kid from the 80's? So I journaled most of what was happening only to be able to understand later on what actually was going on.
While in braces from age 10 until age 16 there seemed a monthly series of rubber band formations that were always changing and remodeling....the was the jaws and teeth fit. I would tell my orthodontist, but was told this was normal. When you are a child, trying to undnerstand why things look so easy for other kids and adults, chewing their sandwiches, laughing with their heads falling back-free and normal- To a child, with muscles pulled like rubberbands and then rubberbands on your braces for your entire adolescence, is it normal? Is it to prove a point? Then during that time you are told the condyles are being 'overloaded' and it's arthritic or hormonal? It all seems like there was nothing that could have been done to prevent it. I researched the 'theories' of pathology in each particular case- " cheerleaders syndrome' which I try not to read too much into why that ever became an actual name of a syndrome. I can tell you that the pain I was in would have canceled out the idea of going into 'cheerleading' the idea of being dropped on my head and flipped around....and at the age one would 'try out' for cheerleading, I was already looking like a parrot head with no chin and would probably have been made fun of by the 'classic' cheerleading syndrome of just girls who get too much attention, with "pagent syndrome Moms' or classic 'trophy child' syndrome. So when I heard that I thought, this must be a joke or maybe early 90's term that should have been thought out a bit more.
At age 14, my 'maloclusion' required a splint, due to the 'regressive remodling of the temporal condyles" my orthodontist, in 1998 wrote: "Her maloclusion necessitates a very thick and obtrusive splint, therefore, she can only wear it when she does NOT have to sing, speak, eat or interact when she is not around her family or peers." I was told that I needed to wear this at all times and also one for sleeping. This would mean that basically my Dr was telling me the best thing to do is to avoid all talking eating, singing, until we can figure out how to get your bones to stop moving- and 'stabilize'. Why not wire my jaw then at age 14 or 15 years? So i followed their directions, no sleepovers, because it was embarasing- but who cares, right- she's only a kid when this all resolves she can have all the sleep overs she wants and sleepovers and fun are a luxury anyway- even though the cost of braces is a luxury.... After following directions, the next letter dictated to the oral surgeon and my Grandfather was: " Her condylar stability continues to be overloaded to a degree that breakdown continues, it is my opinion that she is a "clencher' and this is important, but not the exclusive factor in the absorbtion." So I began to think, am only clenching when I am in pain, and the pain is from the wear and usage of the devices which had to be reshaped weekly, and I was told I was doing it wrong, must not be wearing it always- it was my fault. NO ONE wants to talk about the idea that perhaps orthodontic intervention at an early age could be causing this, because what would that mean? And lets me honest, this could just be my really weird and bizarre case and most cases are not like this at all.
At age 19, the collective group of Drs decided that since I had only 2 mm of breathing space, was choking on the 'devices' that i was required to wear and also the fact that it was official that both condyles had been completely flattened, that both were abnormally flattened and decreased in volume and ( the left was grossly deformed) with a shallow glenoid, no acute fracture and the remainder of the mandible was normal to the coronoid process, ramus and madibular body. No lytic osseeous lessions, while the left mandibular condyle was deformed flattened and diminished with an osteophite. ( this was dictated in 1997, when I was 13 years old) At age 19, after accepting a scholarship to 'sing' opera, told that it was time for a BSSO advancement with sliding genioplasty and multipiece lefort 1 osteomy. Seemed quite cut and dry, lots of people get this.
I hurt worse for people who have far worse battles, so I am not writing this for sympathy-
Fast forward to now, had to have sinus surgery after somehow MRSA and PSEUDAMONAS appeared in my sinuses. No, I was not in a nursing home or hospital- the air way and sinuses have been getting less and less of an opening- I just assumed that because I was constantly sick and never feeling rested that my immune system was 'doing it's own thing.' I tried ever homeopathic way possible to avoid more IV, but oral antibiotics did nothing- and I was putting my trust into an 'integrative' medicine Dr..... all I can say is that it definately was not 'leaky gut'- and needed more than vitamins, but yes, i still want to believe that homeopathic meds will keep me from getting worse. I ended up having 7 weeks of IV Daptomycin, which was a great relief. Following that treatment, I needed sinus endoscopic surgery ( Novmeber 2015) they then found pseudamonas and I had to get on a different IV for that. Finally, thinking I had everything undercontrol and breathing and feeling better were going to happen in no time, new pain began, and familiar because it was the feeling of constant pounding pain, in my head- and i knew it was not neurological because I had been down that road. The results of seeing the oral surgeon: titanium jaw replacements. To know I already have about 56 screws and plates in there, I cannot imagine that putting more titanium in there would be a good thing- but there is this idea that maybe my quality of life could be better? The jaw surgery done in 02 just neurtralized pressure on the joint- or something like that- it was an 'advancment', there is nothing there supporting this 'advancement' so it relapsed, Makes me feel like it was all just a waste.
I know I have a time issue, my body has been through so much infection, weakness, and tissue degrading in a relatively short period of time- I know I am still considered 'young' but I think a person also 'feels' what their body can handle and based on being operated while awake, I know I can handle a lot, but it also takes something from you too, i don't know if it's stamina- or what- but I still do not know if I will be able to have a family- and if I were, would I want that family to watch me in pain- always fighting this? I know the sooner the better. I want to know the real issues and dangers with the surgery- if living a life of not having it and seeing what will happen, open bite, pureed food for years, I can get around all of that- but the idea that it COULD make life better is also on my mind. The cost of this surgery with the best surgeon, who I have been told of- is beyond anything I could ever imagine. If there are complications, as before, even more money- and it would be out of state- and of course, another recovery which would be even more intense than the first one. I want to hear the good, the bad and the ugly. I want to hear about people who had jaw joint replacements and may have to get those replaced again. I am the type who would rather feel the pain than live on the pain meds but I realize that because I am deciding that way it makes it difficult to maintain normal friendships, relationships- I always feel like I am burdening my boyfriend especially when he has to watch me in pain and there are TONS of normal girls out there even 'cheefleaders' without 'cheeleader syndrome'- It is not easy for me listen to people telling you it's combinations of this or that hormonal, arthrictic, based on a 'force' which no one can explain or say did or did not exist. I feel that if a specific pathology could be determined, then I could know the best course of action. If it is arthrtic, would placing titanium joints in eventnally overload other bones surrounding causing it all to collapse? These are just crazy what if thoughts I get, but also, if it's not arthritic or autoimmune based and was a result from years of overly-overloading orthodontics, I could understand that a replacement joint would be worthwhile, because it wasn't the joint itself that was already damaged or hereditary or an accident- the bones gone worn down by the overloading based on the orthdontics- some how, that seems like my bones could handle the prosthetics, and the jaw being the most used joint in the body- I'm more afraid of something worse happening and realizing, oh, I should have kept the deformed joint....I don't want to be a burden to any more people, including Drs. Thank you so much PS Sorry for the 'potato' quality of this image. I know I was an 80s kid and should know how to figure out disk imaging programs and software and whatnot. This is obviously is a skill i did not acquire.
http://i.imgur.com/uMccMyZ.jpg?1
submitted by serandipamine to TMJ

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