Hello, and welcome to KA! If you're at the point where you need to have an osteotomy done, then you've definitely come to the right place and we're very glad you found us!

I had the spinal osteotomy operation back in November 1994 at Beaumont Hospital in the Detroit area. My surgeon was just fantastic and was one of the top guys in the U.S. for performing osteotomies. I'm curious: you say your chin is against your chest AND your lungs are being crushed--what level of your spine will they be performing the osteotomy? The chin problem sounds like they would be working on your cervical spine, but then the problem with your lungs being compressed would indicate the thoracic (middle) or lumbar (lower) region.

Mine was right at the top of the lumbar region, just before the start of the thoracic. The surgeon actually went back and forth a couple times about where he would take out the wedge and straighten me out. At first he was sure it would be solely in the lumbar region, but the morning of surgery, after looking at the results of the mylogram they did on my spine the day before, he decided that it would be best to place the wedge where it would actually be partially in the lumbar and partially in the thoracic. Ultimately, once he opened me up, he went back to his original plan and it turned out to be solely in the lumbar region.

That said, at the time I had the lumber operation, I was also told that a case could be made for doing a second surgery the next year in the cervical region, as my kyphosis in the neck is quite severe as well. Based on your description, it sounds like my neck isn't quite as bent as yours is, as my chin is still a few inches off my chest, but it is fused at a fairly severe angle. Luckily, I can still breathe and swallow with no real problems, and it appears that my kyphosis has either stopped or slowed to such a point that if it is getting worse, it's happening so slowly that it likely won't become much worse for me before something else forces me to shuffle off this mortal coil! When my surgeon told me that having a second osteotomy there was certainly an option, I did consider it; when combined with the first one, it could have left me with spine in a fairly straight position, which would have been amazing.

As you can probably guess from that last sentence then, my lumbar osteotomy was a complete success. Before the surgery, I was bent severely at the waist--I wasn't at a 90 degree angle (i.e., bent in half so that I would be looking straight at the floor), but I bet I was bent between a 60 and 70 degree angle. Even today, when I tell people about how bad my kyphosis became it's kind or hard to explain how it happened so gradually that I didn't really notice how bad it had become until it just kind of smacked me in the head one day. I mean, of course I knew I had been getting worse and I could no longer see ahead of me to see where I was walking without making an incredibly effort, but fusion of that type is such a gradual thing that even though it leads to a very severe problem, you honestly don't seem to realize just how bad things are becoming until it's almost too late. At least that's the way it was for me, and I've had a few other people completely agree with me.

So there I was, bent as a severe angle, and fairly certain that was how I was going to spend the rest of my life. I had been told by numerous doctors and hospitals, including the prestigious University of Michigan (my alma mater) hospital, that there was NO operation to help people whose spines had completely fused because it was just too risky. Thus, even though I WAS aware that things had become quite bad, I had pretty much given up hope of ever changing anything. Then, out of the blue in legitimately miraculous fashion, I learned that there really WAS an operation to help AS patients and that one of the best surgeons in the U.S. was right in my back yard! I say it was miraculous because the only reason I learned about this surgeon was because I had some severe knee pain one day that caused me to make an emergency office visit to a new orthopedic knee specialist--no lie, he was around the 10th or 11th doc I had called trying to get an emergency appointment that day. He took one look at me and introduced me to his partner--yep, the spine surgeon who did my osteotomy. Turned out this doc I went to for my knee was part of this very large practice shared by about a dozen top orthopedic surgeons and that I could not have stumbled upon a better practice in the entire state. Not only did I find my spinal surgeon there, but also the doc who did both of my hip replacements!

The osteotomy itself took about 6 hours and ended up going even better than the surgeon had hoped. The end result left steel rods on either side of my spine that are held in place with hardware and pedicle screws. When I stood up for the first time just 2 or 3 days after the surgery, I was so stunned by what I saw that I started to cry--in fact, there wasn't a dry eye in the room, as my mom and this huge, very macho male nurse also ended up with lots of tears when I realized that I could see my face in the mirror over the sink for the first time in at least 5 years, maybe longer! I went from being bent at a 60-70 degree angle to what is probably no more than a 20 degree angle, which is a huge improvement. In fact, most of my remaining curvature was, and is, in my cervical spine, as I mentioned earlier. That's why the doctor brought up the idea of doing a second osteotomy--actually, we had talked about the idea of possibly doing 2 surgeries before we did the lumber operation, but that was purely hypothetical talk. Once we saw what I had gained from the first surgery and what was left that could still be corrected, however, then the idea of doing a second surgery became a real possibility.

I won't try to deny that I was at least tempted to have the second surgery, but in the end, I decided that I did not want to go that route, at least not at that time. Now, 15 years later, I still have never had the cervical osteotomy, and, unless my kyphosis suddenly became much worse, I never will have it. The reasons for this are pretty simple. Don't get me wrong--the idea of having my spine being fused in a much more upright and straight position is very appealing, even now. It is mentally exhausting to go out in public and catch people openly staring at me, and the intentionally and unintentionally ignorant comments and actions I've had to endure through the years have been mind-boggling. Ultimately, however, I realized that having the operation to "straighten up" to put an end to the stares, etc. would really be just another form of cosmetic surgery, plain and simple. Yes, it would relieve pressure on all of my internal organs, but there was nothing then and nothing now to indicate that I have any severe problems in that regard. Also, as I mentioned, I can breathe and swallow with no problem; that said, I definitely can't open my mouth more than an inch or so, and that has caused problems with dental work (I've posted a lot about this the past two years), etc. Also, as we've learned during the numerous surgeries I've had, the curve in my cervical spine makes it very difficult for doctors to intubate me. Even under perfect, controlled circumstances, it usually takes up to 45 minutes to perform an "awake intubation" before surgery, so I have some very real, very serious concerns about what would happen to me if I ever needed an emergency intubation following an accident or heart attack, no matter if it was in the field or in the hospital.

Ultimately, the problems with intubation, etc. were almost enough to convince me to have the second surgery, but not quite. After some soul searching, I decided that having the surgery would mostly be due to vanity and cosmetic concerns, and those reasons are just not good enough to justify having a surgery that has some real risks associated with it. I'd like to issue a bit of a warning to you right now to let you know that the number I'm about to include should not scare or concern you for two VERY important reasons: First, it was 15 years ago that this number was given to me; and second, you might not even be having exactly the same kind of osteotomy that this number pertains to. Even if it is exactly the same though, there have been so many advancements in surgery and medicine in general that the number I was quoted is likely meaningless. The number I'm being so cautious about revealing is this: When I had the lumber osteotomy, my surgeon said that the most serious potential side effect was paralysis, which would occur from the site of the operation downward. Thus, with the lumbar surgery, even if the worst happened, it would have been from the waist down. With the cervical osteotomy, my doctor told me that the risk of paralysis climbed to 15 percent, and, obviously, it would be from the neck downward, not the waist, meaning I would lose the use of all four limbs. To me, this number was far, far too high to consider for what I had determined to be almost solely cosmetic reasons--I didn't (and still don't) see any way I can justify having the surgery. Actually, that means I should have listed a third reason why you shouldn't be alarmed by that 15 percent number, and it's a big one: You have made it clear that your surgery, even if it is cervical, is clearly not just for cosmetic reasons. In fact, it sounds like you are reaching the point where having the surgery might be a medical necessity and not an elective procedure.

OK, those are the basics of my operation as well as the thought process that went into deciding to have the lumbar operation and NOT have the second, cervical surgery. I don't know if this helped you in any way, but I hope it did. I just want to stress again that my lumbar surgery was a complete and total success, and it absolutely did change my life. There are at least a couple dozen more KA members who have had an osteotomy of one type or antoher, and there's a chance that number is much higher. The problem is, I can't remember any names of others who've had it right off the top of my head, with one exception. There is a moderator who goes by the user name "woodcarver" here at KA who has had two osteotomies and other procedures as well. You can try sending him a private message here at the site to see if he is checking his mail, but he does not post here very often anymore. I do know that he has run into difficulties with his last osteotomy, which means that he probably would be a good person to talk to; I would go ahead and send him a PM, as there is a chance he might see it and be able to help you out.

The other person who posted mentioned that the KA member named Alan has also had an osteotomy, and I think that is true. He goes by the user name "ineptwill," and you should have no problem finding him, as he is a very active KA member who posts here regularly. Sending him a PM is probably your best bet to ask him about his experiences. If you'd like to get feedback from others who've had the operation, I recommend one very easy thing you can do to gain more attention for your post: While this is the surgical forum, you'll reach the most members by posting in the main forum, the one called the "#1 AS Web Support Group" on the Main Index page. And don't worry--it's totally ok to make a post about surgery there! The specialized forums exist so that there are separate areas set aside for more popular topics, but their presence does not mean you can't make a post in the main forum involving ANY topic related to AS! Go ahead and introduce yourself in the main forum and ask about osteotomies there--you should hear from several other people who've had the operation.

Good luck, hope that helped, and please keep us posted when you have your surgery, ok?


He who has a 'why' to live can bear with almost any 'how'.
--Friedrich Nietzsche

Sounds like everything takes time, discipline, and patience, and those are seven things I don't have.
--Jon Dore