Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Recovery isn't always terribly uncomfortable, and I think the issues (as I understand CF, mainly problems of mucous and phlegm and ability to breathe?) may not even be involved, if what you need is lower. Sounds like, though, you're thinking you'll need upper, too, which may be more problematic. I believe I would want to talk with the doc who's tending the CF, at length, and get that doc to talk with the orthognathic surgeon. You may even be lucky enough to find an OS who specializes in helping CF patients. I'm sure there is one, somewhere in this world of increasing specialization. Good luck to you. I hope you get the expert help you need. And hey, given your age, and your experience dealing with the CF problems, you may be able to teach the docs a thing or two. I would also definitely be looking for a teaching hospital with a specialization in the CF problems, I think, if there is such. Best, Cammie > Hello all, > > So, I'm trying to make a decision if I want this surgery done or not. > The recovery sounds pretty uncomfortable as it is, and I've got other > complications. I also have cystic fibrosis, so there's a whole slew > of problems I'll have to deal with. IF there's anyone out there who > has CF who has had the surgery I'd love to hear your experience. And > for those of you who have had the surgery, i'd love to get a rough > sampling of worth it/not worth it responses! Some of the photos were > pretty remarkable. I JUST WANT MY JAW TO LINE UP! I'm 29 btw with, > and they'll have to widen the palate, pull the top jaw forward, and > fix the canter on the bottom jaw! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Hi Welcome to the group. I have am yet to have the surgery and I do not have CF. However, since I have a very basic understanding of what CF involves I wanted to ask you whether you've spoken to a surgeon about this yet? Since a lot of people tend to have problems dealing with a lot of mucus and phlegm after surgery I think they would have to be extra careful with you and monitor you on a daily basis to check for any infections (I guess you do this already anyway). My guess would be that they will keep you in the hospital for longer than most people but I could be completely wrong. I would also ask how, if any way, your CF could be affected by having the operation since in many people it affects the way they breathe and my guess would be that this is connected in some way to the lungs, hopefully in a good way! Yes the recovery sounds uncomfortable but I think the majority of people think it was worth it. Of course, I think with CF your recovery might be a little harsher than for the rest of us. Sorry, I haven't been of much help. Bottom line - speak to your doctors if you haven't already and weigh all the pros and cons. Good luck in making your decision and keep us posted. Sara > Hello all, > > So, I'm trying to make a decision if I want this surgery done or not. > The recovery sounds pretty uncomfortable as it is, and I've got other > complications. I also have cystic fibrosis, so there's a whole slew > of problems I'll have to deal with. IF there's anyone out there who > has CF who has had the surgery I'd love to hear your experience. And > for those of you who have had the surgery, i'd love to get a rough > sampling of worth it/not worth it responses! Some of the photos were > pretty remarkable. I JUST WANT MY JAW TO LINE UP! I'm 29 btw with, > and they'll have to widen the palate, pull the top jaw forward, and > fix the canter on the bottom jaw! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 I really can't belive I'm saying this, but.... WHY do you want your jaw to line up? I had surgery to remove a growth that has eaten away my jaw bone (only a pencil width of actual bone remains). The " tumor " was removed and a graft was implanted that should solidify in 6/8 months. The numbness is really uncomfortable. I had NO discomfort before the surgery - just a bad XRay. IF you are have the surgery for cosmetic reasons....NO!!! If it will improve the long term quality of your life, what the hell!?! The numbness is better than PAIN! JP > > Hello all, > > > > So, I'm trying to make a decision if I want this surgery done or not. > > The recovery sounds pretty uncomfortable as it is, and I've got other > > complications. I also have cystic fibrosis, so there's a whole slew > > of problems I'll have to deal with. IF there's anyone out there who > > has CF who has had the surgery I'd love to hear your experience. And > > for those of you who have had the surgery, i'd love to get a rough > > sampling of worth it/not worth it responses! Some of the photos were > > pretty remarkable. I JUST WANT MY JAW TO LINE UP! I'm 29 btw with, > > and they'll have to widen the palate, pull the top jaw forward, and > > fix the canter on the bottom jaw! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2005 Report Share Posted May 8, 2005 Cammie you are so right as usual! I do not medically need this operation but am one of those people who has been mercilessly teased through my whole life, and no it doesn't stop when you're an adult, I'm 32 and I have been called names in a pub as recently as January which is why I looked into this whole procedure. I don't like to go out much any more, I am self conscious of sitting side on to people, hate having photos taken, think I will be single forever, I could go on. I now know how bad my jaws look on an x-ray and what is needed to fix it and it's a scary decision to make for any of us whatever our reasons for wanting to do this. Medically although my jaws don't meet at all correctly I would be fine if I carried on as I am. Unfortunately mentally I don't think I could hack it and that is as important, so I agree it's important not to belittle other people's problems unless you've been there yourself. This group has been an absolute pot of gold for me and the support here is amazing, whatever our reasons for being here we have to be here for each other! Suzan ceast36532 <no_reply > wrote: Awww. I can certainly sympathize with your sentiments, and understand, I think, where you're coming from. I really, really do not want any surgery that isn't completely medically necessary, at least on my body. (Pamela Sue, or whatever her name is, can do as she wishes, as long as I need not pay for it.) When surgery is necessary, either to alleviate pain (which some alignment surgeries can be) or to save a life -- the other reasons for the choices can seem of minimal importance. But there are people who have been teased, derided and been made to feel freakish because of the ways their jaws meet. Some folks also suffer through incredible troubles with migraines, jaw pain, inabilities to eat and/or chew. You wouldn't believe that a few little bones being out of alignment could make such a difference, but they can. I had a friend who had a slight -- indetectable to anyone else -- imbalance in the length of her legs. When she used the properly prescribed and fitted orthotic, she could walk forever. Without it, she was a basket case in a block or two. So don't figure you know what someone else's troubles are until you've been there yourself. And I do hope that your implant gives you relief from the numbness, and that you don't have pain. Most of all, that the tumor has come to a screeching halt for you, and that you have good expectations for your outcome. But hey, if you'd be happy with a mismatched jaw and greater comfort, I would have no problem with that at all, either, unless dental issues raised concerns, as they did for me. (Actually, I wouldn't have problems if dental issues did raise concerns, either, because I would figure it's totally your choice, and that's how things should be!) Of course, such choices are exactly that -- choices. And all these procedures are a matter of weighing risks and benefits, and figuring out how it may work out best for the individual. C. > I really can't belive I'm saying this, but.... > WHY do you want your jaw to line up? I had surgery to remove a > growth that has eaten away my jaw bone (only a pencil width of > actual bone remains). The " tumor " was removed and a graft was > implanted that should solidify in 6/8 months. The numbness is > really uncomfortable. I had NO discomfort before the surgery - just > a bad XRay. IF you are have the surgery for cosmetic > reasons....NO!!! If it will improve the long term quality of your > life, what the hell!?! The numbness is better than PAIN! > JP > > > --------------------------------- Quote Link to comment Share on other sites More sharing options...
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