Glen's Obstructive Sleep Apnea (OSA), UPPP, MMA Surgery Blog

11 - 3+ Year Update

2011-11-03T22:01:00.000-05:00

Well, it's been quite some time since I've posted an update. In reality, there really isn't much to report that is significantly different than it was last time. I still have that lingering numbness in my chin and a little in my gums. It doesn't bother me much other than when my face gets cold. It just enhances the stiff feeling that a cold face normally gets. I am still sleeping fairly well. I have found that my weight does have a certain threshold that I can't cross. I have bumped up against that threshold a couple of times and if I lose 5 or more pounds, my sleep improves dramatically. That's interesting to me because my weight was never considered to be a root cause of my OSA. I'm a fairly broad-shouldered 6'-3", so I am overweight by the chart in the Dr's office, but I would only be able to achieve the chart weight if I lost all possible fat and removed one leg. So, I can stand to lose some weight, but not near what that silly chart says.

I have received emails from several people either asking me a question or just commenting. I actually just now responded to someone considering getting surgery with Dr. Viozzi. I'm happy to answer anything I can about my experience and am sorry that it takes a little while for me to respond. If it's been a while and I haven't answered, please feel free to follow up and remind me. I know how important every little bit of information can be when struggling with OSA. I don't think I'll ever forget some of those nights of terror I had and how hungry I was for information.

Overall, things are going very well. I doubt I will ever forget the whole experience dealing with OSA. I will try to keep this blog updated at least once a year or so. I don't think any more often would really be beneficial for anyone as things are pretty stable. I think it could be reassuring to some to hear whether or not MMA may be a permanent solution. I know there are some who have had such success with their surgery that they basically fall off the face of the Earth. GOOD! That means that they've moved on with their lives and have a new focus. I know that when I was looking for information prior to surgery, the one thing I couldn't find was someone still posting after 5 or 10 years. It would have been very reassuring to me to see a ten year success story. I'll do my best. Good luck and I hope you all have a great 2011 Holiday Season and a great 2012!

10 - 1 1/2 year (+) update

2010-01-22T23:17:00.002-06:00

Hello all!

Well, it's been a little over a year and a half since the surgery and things are going very well. I am back in school and getting A's so far. I am working part/full time depending on my class schedule. The great thing is that I have the energy to do it. If I were still struggling with CPAP, I don't think I would be enjoying my new chosen career path as much as I do. I can stay up late working on homework or other tech related things that could be labeled homework in a sense. What's great is that I can get 5-6 hours of sleep and still function pretty well. Prior to the surgery, 12 hours wasn't enough. I am still tired with only 6 hours, but I am only tired. No headaches, chest pains, night sweats and just general fear of sleeping.

I still have some significant numbness in my chin and lower lip area, but it's something I have learned to ignore for the most part. I have at least a little feeling in close to 100% of the effected areas. Dr. Viozzi thought I'd get it all back, but he also said that stretching is the hardest thing for a nerve to heal from. I am ok with what I have knowing that it is probably permanent. He informed me plenty that this was a risk. It's not something that I dwell on because it really doesn't cause my any real issues. About the worst thing is being out in the cold. My mouth-chin-lip area got kinda stiff in the cold before the surgery, but now it's a little worse with the addition of the numbness. Still, not a big deal.

I still do have some sleep issues from time-to-time. But these issues pale in comparison to what life used to be like. Things tend to get a little worse in the winter due to a stuffy nose, but I still sleep pretty good. I did have a second septoplasty, but that didn't seem to really help. I don't have any plans for any additional work, either. I have kept up with some excercising, but not religiously. I have gained back some of the weight I lost after the surgery, but some of that weight is muscle. (But some of it isn't ;)

About the only other issue I have is a slight misalignment...and that's probably not the best way to describe it. More like a floating bite. Because of that unplanned break on my left side during the surgery, the jaw muscles and whatever else don't act the same on the left vs. right sides. Also, I do get a little TMJ pain from time to time. But some of it may be due to the uneveness of the break as well as favoring one side when chewing. I think it was WesternJoe who had a similar issue and fixed it by chewing more evenly. I tried it and it definitely seemed to help.

I do get an occasional email from someone checking this out from the link on the sleepnet forums, and I want to encourage anyone reading this to go ahead and send me an email if you want to ask anything. It may take me a bit to get back to you, but I try to respond as quickly as I can. Well, that's about it. I still think the surgery was well worth it...even with a couple of lingering 'issues'. Take care everyone and have a great 2010!

9. 1-Year (+) Update

2009-07-20T19:43:00.002-05:00

Hello,

It really is true that after sleep apnea stops being the focus of your life, you just kind of fade away on the posts and blogs. I am now a little over a year post-MMA. I've had a lot of things happen since my last update, so I'll try to summarize as best I can.

As my previous posts suggest, I had some problems after my MMA. I still felt I had significant apnea disturbing my sleep, but I had one sleep study about 6 months after the MMA and at my insistence, there was another at about 9 months. Both sleep studies had the same result...And AHI of about 1. So, for all practical purposes, I was and am cured. I wasn't sleeping well at night and I even spent most of December and a good part of January sleeping on the couch. I had been in a car accident in October and had a neck injury that wasn't helped by my time on the couch. The accident wasn't related in any way by my sleeping issues as I was rear-ended by someone on a cell phone.

So, after my second post-op sleep study, I finally had to admit that my sleep issues at that point were most likely mental in nature. I think one of the biggest problems I had was the temazapam. I think it took much longer for my body to purge those chemicals than I first suspected. Also, I think sleeping badly was a learned behavior that had to be unlearned. A bad habit is hard to break.

Well, it's July now and I don't think I had really good sleep until about March 2009. So, even though I was cured, it took me a long time to really get over the issues I was having. I still have some apnea episodes that wake me up, but they don't seem to be too severe. My wife recently witnessed one of my episodes and she said I had just started snoring a little louder on my back and gave louder snore and stopped breathing for just a second and woke up right away. I still do snore, but she is able to sleep though it mostly. Also, if my nose was a little more clear, there were some nights that I didn't snore at all. Well, that leads me to the next event.

Because most of my lingering sleep problems seemed to be related to poor breathing through my nose and my mouth falling open, I decided to address the problem. I visited with the ENT that had done my UPPP, septoplasty and turbinate reduction. He did see that my turbinates had enlarged noticeably and that my septum had displaced a little. This is most likely an effect of the swelling and tubes that were such a fun part of my UPPP. So, about a month ago, I went in and had another turbinate reduction. Things have improved somewhat and my snoring seems to have lessened. My mouth still tends to fall open when I lay on my back, but I'm hoping that my body will fix that on it's own now that I can breath through my nose.

Through this entire ordeal I have been layed-off from one job, closed my business that I started after that and spent about 4 months unemployed with no unemployment benefits because I was self employed. If I had still been dealing with OSA and all of the other sleep issues, I don't think I'd have dealt with all of those things as well as I have. I have now changed gears and enrolled in classes to get a different degree and have started a new temp job that may turn to permanent. During my time off (I was telling people that I was using up my unpaid vacation) I redid my bathroom and self-studied for a new certification for my new career path and did a lot of other things that I had the energy to do now that I can sleep.

One thing I have to clarify for those contemplating surgery or any other OSA treatment...for me, there wasn't a magical change in my sleep. My life is much better than after the UPPP that made things worse. It's also better than on CPAP. CPAP did make things better, but I am much happier now. I may still feel tired on some days and still need more sleep, but figure that I probably feel like most people without apnea.

As far as healing, I still have partial numbness in my chin, mostly on the left side and some on my gums and palate on the maxilla. I have some minor TMJ issues, but they aren't any more than an annoyance at this point and are only intermittent. The only other side effect I have, and I don't know if this is just a natural change or if something caused it...My eyes tend to dry out with my contacts in. I haven't done any research on the matter, so I can't point to any cause or possible cause other than being another year older.

Well, that's pretty much the last 9 months. I will try to pop up here every so often to update, but it gets more difficult as time goes by. I know it will be of interest to people who are curious about the long-term success of MMA surgeries. If you are contemplating surgery for OSA, the single best thing you can do is research and ask questions. Get second opinions and ask more questions. Don't buy in to the first good thing you hear. There are no guarantees and beware any doctor offering anything sounding like one. Visit sleepnet.com for a long time and see what issues other folks are dealing with. This is not the time to jump in with both feet. Good luck and God Bless!

8. 4 1/2 month update

2008-11-03T14:50:00.005-06:00

Well, I haven't posted for some time now, so I figured I should get caught up. Things have been moving along very slowly as far as recovery goes. I struggled for a month or so trying to get off the Temazapam I had been taking for almost 8 months. If I had known how much trouble that stuff was, I'd have refused to take it. I'm a little disappointed that my doctor (not Dr. Viozzi) didn't tell me how bad that drug is to get off. I was having sleep starts, sweating, insomnia and probably a few other problems while trying to wean off the drug. I finally kicked it with the help of some Ambien CR, which isn't a picnic either, and with melatonin. I'm now taking 5-HTP each night to help get some sleep, and that seems to work fairly well. I haven't noticed any adverse effects from that yet. I haven't been getting much feeling back other than what I had a couple of months ago, but I think there may have been some improvement. I have at least some feeling in 95-100 percent of the affected areas. Some areas are difficult to gauge feeling in. The worst areas right now are my upper gums under my nose and the lower gums. The next worse is my whole bottom lip and chin area. There is feeling there, but it feels stiff and tingly when I touch it. I am still hoping that more feeling will return.

The only ill effects I seem to be 'suffering' from that bad break on my right mandible is that my jaw has the tendency to slide back on that side when chewing or laying down. It makes it feel like my jaw is a little out of alignment, but based on what Dr. Viozzi said on my last visit, it is most likely muscle related and may improve over time.

As far as sleep goes....I'm still having difficulties there. Now that I'm over the Temazapam withdrawal, I'm able to gauge things a little better. My sleep is more consistent than it had been before the MMA, but I am still having apneas. I have a sleep study coming up in a couple of weeks to see where things stand, and I have a feeling that considerable improvement will be recorded. I am sure that I'm not "cured", but based on how I feel and how I'm sleeping, I am guessing that I'm going to come in somewhere on the border of mild to moderate apnea. I had recorded myself sleeping a few times to see what I could see, and what I did notice was that the apneas I was able to see weren't easy to spot. Also, I was able to sleep for some pretty extended periods of time without visibly rousing. That would not have been the case before the MMA. So, without knowing anything definitive at this point, I've made some assumptions and used that to guess at what my options may be at this point.

I am certain that I still have at least 'mild' apnea and some of those apneas are definitely tongue base related as oppose to palate related. The options at this point are probably these; CPAP, GA (tongue advancement), TAP appliance, or tongue base somnoplasty. One other thing that people have had done is hyoid advancement, but Dr. Viozzi is a little leary of that procedure in light of some problems he's heard about. If there are other options, I don't know what they may be at this point.

Of that list of options, I'd really like to start with the tongue base somnoplasty, but there are two problems with that. First, there isn't anything conclusive that says the procedure has a significant effect and has questionable durability. So, it can't be proven to work and if it does seem to work, it doesn't last. So, in light of that, the next problem is that insurance won't pay for it. What I can't seem to wrap my mind around at this point is that if surgical procedures to reduce tongue volume have a positive effect and somnoplasty also can have similar volume reduction, why doesn't it work as well? Maybe the surgical reduction doesn't really work well either? I'll definitely be asking Dr. Viozzi that one.

The next option would be the TAP appliance. I'm not convinced that this device would help me and I'm not sure I'd be happy having my jaw held forward like that anyway. Also, I'm not convinced that it would stay in place after I fell asleep. I'd prefer this over CPAP and GA, but not by much.

The next option is the Genioglossus Advancement (GA) or tongue advancement. While I'm not thrilled about the idea of another surgery and one that may cause additional or permanent numbness, the idea that I could sleep soundly without any drugs or hardware is very attractive. I know Dr. Viozzi was very hopeful that it wouldn't be needed, I think that it may need to be discussed. One good thing about this procedure is that it has a good track record and insurance companies cover it.

The last option is also my least favorite. CPAP. I have returned my machine and hope to never have to use one again. Even after having resigned myself to using it, I was still unable to sleep with it. It definitely "cured" me when I was able to sleep, but I wasn't able to sleep for any length of time while using it. I don't see that changing. I'm sure I could get by with lower pressures now, but the problem was never really the pressure. It was having something attached to me. That is another reason I don't thing the TAP appliance would work well for me. I think it would cause more disturbances than it fixed. I would be willing to try CPAP for an interim period while waiting to have something else done, but I know it isn't a long-term option for me.

So, that is how I see things standing at this point. So, the big question.....Knowing what I know now, would I have still had the MMA? Yes, I would. It would have been a little tougher to say yes if I knew I wasn't going to be cured, but it was still the best option. Also, I'm sleeping a little better now than I did with CPAP. I am very anxious to see the results of the sleep study and be able to quit wondering. I want to move on to the next step and try to get cured. The only other thing I have to add is that it seems that the question about my appearance is that the change was for the better. I didn't have a recessed chin, but with everything in it's new place, my wife seems to think I have a better profile than before. I don't care so much about my appearance, but if my wife can feel like she's standing next to someone who is a little better looking than he was 5 months ago, that's fine by me.

7. Weeks 9 - 10. Lots of good news

2008-08-26T11:00:00.004-05:00

I met with Dr. Viozzi on August 20th and it was a great visit. I had been fully expecting that I would have the arch bars removed at this appointment, but I forgot that we would be deciding that at this appointment and it was possible they would be staying on. This was Dr. Viozzi's first week back after a two-week vacation, so he was very busy. My wife and 2 1/2 year old daughter were with me and we arrived at the Mayo Clinic about 50 minutes early. While we were showing our daughter the view from the 12th floor, Dr. Viozzi walked around the corner. After some happy hello's, Dr. Viozzi asked us to come right in because it would actually work out better for him if we did. I had no problem with that because I was planning on getting the hardware removed. Dr. Viozzi's nurse came in within a couple of minutes and she told me that she had read my blog and has also forwarded it on to Dr. Viozzi. He hadn't had a chance to read it yet, but I suspect that the main reason they removed the arch bars that day is because the nurse read my blog and the expectation that I had for their removal. They usually remove the arch bars in a procedure room in another building, but they decided it would work out fine in the room we were in. I don't think it was planned that way, but it worked out just fine (at least for me).

A spray was used on my gums to reduce any pain I might feel and it was supposed to taste like Pina Colada or something like that. It didn't really taste like that to me, but I can't begin to describe what it did taste like. But the taste was more pleasant than arch bars, so I won't complain. I think it took less than 10 minutes for them to take out the arch bars and there was very little pain. A couple of the wires hurt when they were removed, but it wasn't too bad. It felt great to finally have those things out. It also meant the Dr. Viozzi agreed with my assumption that I was doing well enough to have them out. He ordered a panoramic x-ray to make sure all the bits of wires were gone and to make sure there weren't any surprises in there. When he came back, he had some good news I wasn't expecting to hear that day. If you remember from my earlier posts about the unplanned fractures I had on my right side, we were taking a 'wait-and-see' approach to see how the bone fragments would heal on their own. I was expecting to go back in November or so to see how that area was doing. Dr. Viozzi came back in and said that he could see bone forming in the fractures and the pieces were healing together just fine. I figured I'd have to wait 6 months to hear anything definitive on this, but I got the good word in just over 2 months. Based on that and the fact that I didn't have any real bite issues, Dr. Viozzi basically took off any eating restrictions for me. I could start working my way up to foods that were harder to chew at whatever pace was comfortable for me.

All that good news coupled with the progress I have made with sleep made me pretty happy. Prior to my latest visit, I had stopped taking any medication to help me sleep and had started setting an alarm again. I had tried Ambien CR, but I always had a hangover from that. I even stopped the trusty temazapam. I still had been wearing ear plugs as I would wake up at the slightest noise for some reason. I figure it's just because I had to wear ear plugs for the past 1.5 years while on CPAP and dealing with other problems. This seems strange to me because I used to snore so loud. We also started locking our cats in the basement at night. They weren't too bad to have in there, but it seemed like any slight movement would wake me up. It doesn't help that one of them is a bed hog. We may try letting them out at night after a while, but we should probably wait until things stabilize a little more.

Today, about a week after arch bar removal, sleep is still getting better. I slept without ear plugs for the first time last night. I only remember waking up once and was able to fall asleep fairly quickly. I woke up before the alarm, but decided to lay there for a while. I dozed a little until the alarm went off and then got up. I still feel tired during the day, but not like I did while on CPAP. If things didn't improve at all from where they are now as far as sleep goes, I'd have to consider the operation a success. I finally took the CPAP back yesterday and haven't had to use it since that little episode a few weeks back. I have more feeling coming back in all areas that were affected. It took about 6 weeks before I started getting any feeling in my chin, but now I even have some feeling in my lower lip. I still have numbness in my gums, mostly on top. There is still some residual swelling on the front of my face below my eyes and under my nose. I'm told that this will take 6-12 more months to go down, but it's not enough to bother me at this point. Basically, wherever there is any screw or plate, there is a little swelling. The only other place is on my right side where those fractures occurred. Some of these things tend to make my face look slightly lopsided, but I don't think anyone other than I can tell. I'm not that picky about my appearance, so I'm not bothered by it. It will go away in due time.

As far as eating goes...I ate pizza last night and was actually able to take fairly normal bites off the slice instead of using a fork. My biggest limitation is that I can't open nearly as wide as I had before, but that is getting better, too. It will be a little while before I can eat a burger or brat, but I can deal with it.

I have also been able to shoot trap again since week 6, and that has gone well. My scores picked up right where I left off, so I was really happy with that. I did notice that if I shot more than one round, I would have a little soreness, usually on the opposite side I held the gun. I think it was just that my jaw wasn't used to being in that position. We had our end-of-season shoot-offs last weekend and I shot a total of 7 rounds (175 shots) and I only had a little jaw soreness on the opposite side. It was all gone the next morning, so no problems there.

About the only lingering issue I have is one I forgot to ask Dr. Viozzi about. I have some add feelings in my left ear that seem to be persisting. It's rather hard to describe, but it's like my inner ear feels hot from time to time. Kind of like the feeling you get in a finger if the circulation was cut off and then returned. It's not getting worse, so I'll probably wait to see if it gets better.

6. Weeks 3 - 8

2008-08-15T09:53:00.004-05:00

Well, I haven't been very diligent in posting new information up here, but if you've read other blogs as well as the Recovery Timeline, you will have a good idea as to the more general progression of events. I'm going to be a little less detailed than the day-to-day types of blogs you may have already read. That is mostly due to the mental setbacks that I experienced starting at about week 3.

My physical recovery had been going pretty much as expected with very minimal pain, decreasing discomfort and improved eating. I was still taking medication to help sleep, but I was also having to sleep fairly upright until about week 5. During week 3, I had one night where I slept very soundly and woke up the next morning feeling great! I was sure I was cured! Well, that was a premature assessment. When you read in other places that there are ups and downs, believe it. I went to one day of feeling great, to a couple of weeks of more hell. What caused this hell? My apnea came back...or so I thought. I started having episodes where I felt I was choking awake, feeling that someone had been beating me on the chest for about an hour and sweating like I had been running for an hour. Just like the good ol' days. Well, I started trying to find different positions to sleep in and sleeping in bed was now out of the question. CPAP wasn't an option because I could keep the thing from blowing air out of my mouth and I couldn't get a full face mask to work at all. So, I started in on a good solid case of mild depression. I didn't want to work on this blog, I didn't want to try to work, although I probably could have put a few hours in. I didn't even want to do the fun things at home that I was able to do. I just wanted to sit around and wait until I was physically healed so I could try the next surgery to make things better. So here I am, wired shut, moderately uncomfortable, months away from being ready for any kind of additional surgery, but seeing that as my "only hope", I felt trapped.

I followed this pattern for about 4-5 days until I finally was able to dig myself out with my wife's help. She helped to remind me that we figured the most probable outcome of the MMA was that I'd still have to have something else done to get a complete or mostly complete cure. So, my mood improved and I started getting back to living a little again. Finally, it was week 6 and time to get my wires cut. Dr. Viozzi's nurse (whom I haven't asked for permission to name yet) called me early that week and all I could think as my wife handed me the phone was that they were going to make me wait longer. Well, Dr. Viozzi had her call me to move me up a day as Dr. Viozzi was going on vacation. Well, being the pessimist that I sometimes am, I figured he was cleaning up his schedule so that he could get started on his vacation early. Well, I was wrong there, too. Dr. Viozzi wanted to cut the wires a day early so that if I were having any difficulty, he would be there the next day to help instead in some far away place.

I want to take a moment here to talk a little bit more about Dr. Viozzi and his nurse. I started down this road being very distrustful of surgeons due to my experience with the UPPP. After meeting with Dr. Viozzi the first time, I started thinking maybe he was alright, but I still needed to be careful. I have come to believe that Dr. Viozzi must be the pinnacle of what doctors and surgeons are supposed to be. Very intelligent, kind, thoughtful and caring. I figured that a doctor working at the world renowned Mayo Clinic would be always in a rush to leave and grow tired of questions. I have never had cause to believe any of that with Dr. Viozzi. Even when I thought the surgery had failed, I didn't blame Dr. Viozzi or doubt his ability. By that time I knew he only had my best interest in mind and that he had fully prepared me for what was going on. I was certainly disappointed when I thought the apnea was still going strong, but not in him. I would recommend him to anyone who is looking for an opinion on what to do with an OSA problem.

I met with Dr. Viozzi that Thursday, which ended up being a few days short of the requisite 6 weeks for being wired shut, but I was (happily) willing to take the risk of being opened up 3 days early. My jaws felt very strange after being released. It was a little difficult getting my teeth to bite and move my jaw around. I was able to open just wide enough to get a toothbrush around to get the worst of the gunk off my teeth, but it was a little painful. The arch bars had to stay in to help me get my bite movement on track and also to band up at night before bed to keep from jarring the right side where all the problems were. While I was there, I told Dr. Viozzi of my fears that the apnea had returned, but he still said it was too early to tell. There could still be some residual swelling and that was the reason that follow-up sleep studies didn't happen for 6 months after surgery. I had begun to think at this point that he was just trying to offer me a little hope to get me through but didn't really believe what he was telling me. I'm sure that was my pessimism coming through, too. He had never offered false hope or minced words before this, so there really wasn't any reason to believe it now. He ordered the panoramic x-ray to take a look at things, but didn't order the "side view" that would show my airway. When I was in the room with his nurse, he popped his head in to order the "side view". If I had to guess, I would say that he would not have ordered that view unless he was trying to show me something. I think he thought it was premature to take that picture that early. I may be wrong, but I still think he was looking to give me some proof that things may not be as bad as I thought. Maybe someday he'll tell me. Well, after a brief wait, Dr. Viozzi came into the room and said he had some great news. My airway was much larger than it was before. He showed us the picture, and it was even more open than I expected it to ever be. Dr. Viozzi didn't come right out and say it, but from the answers to some of my questions, I think he was having doubts about the accuracy of my apnea claims. I don't think he thought I was lying or anything like that. I just think he felt that either most of those "symptoms" would go away, or there was some other problem. It did make me feel much better, so if that was the goal, it worked. I now had a real dilemma. If I now had an airway you could drive a truck through, what was waking me up at night?

During the first days, eating was not very easy and I found myself eating less than I had when I was eating through a syringe. I kept to very soft foods and even those made my teeth and jaws hurt. It was all very strange. The entire top of my mouth felt like it was very loosely attached even though it was very solid. Over the next week, things improve and eating became much easier. I also started to sleep in bed with the help of a new medication, Ambien CR. Insurance didn't cover a penny of that prescription, so $145 later, I had a new drug. I kept feeling like I had some pretty nasty apnea, but I started to think of it differently. I had to leap to the conclusion that I no longer had apnea and that some other thing was making me think otherwise. Again, it was too early to make that leap, but that is how my mind works sometimes. So, now "knowing" that I didn't have apnea, I was free to explore other explanations. To make a days-long process short, I determined that the majority (if not all) of my symptoms were due to swallowing difficulty. Something that I hadn't really thought about was the fact that I had to bow my head slightly in order to swallow when my teeth were held tightly together. I didn't really think too much of it, but now that I was looking at all other possibilities to explain my problem, things start to squeeze into place. Granted, I was the one squeezing them, so I'm sure my judgement was clouded a little in an effort to make this theory work for me. If I then thought about the position my head was in when I had these episodes, it seemed that most occurred when my neck was either fairly straight, or even slightly tilted to the rear. This made swallowing while sleeping very difficult and I think it was that struggle (which does involve the tongue) that cause me to wake and had a feel similar to a tongue-based apnea. I now had a working theory that let me have my apnea cured and explained why I was waking up.

Armed with this new information, I decided it was time to get my sleeping habits back on track. I decided that the quickest way to get myself back to a normal sleep cycle was to force myself back into one. It would be a little painful and deprive me of a little sleep, but I felt that with my apnea now cured, I should shake the rest of the bad stuff out, too. I quit taking any sleep assisting medications and started setting my alarm. As of the date of this post (8/15/08) I am finishing up the first week of this new plan. Just as expected, I have lost a few hours of sleep, but I feel that things are improving. I am waking up a few times during the night, I almost never sweat during sleep anymore, and the bags under my eyes are slowly lightening up. I also figured out that the reason it felt like someone had beat me in the chest before was most likely caused by anxiety. Since I convinced myself that the apnea was gone, the anxiety when having one of the waking episodes went away rather quickly, too. I get to go get the arch bars off next week, so I am hoping that having free roaming jaws will help reduce the number of wakings due to swallowing....assuming that my theory holds true. My wife and I will also be gradually setting the alarm earlier and earlier to get us to our goal of getting back a couple of hours of our days. I still don't know what the future holds for the right side of my mandible, but other than some funny noises and some residual swelling, that side isn't giving me any problems. My teeth sometimes feel like they make earlier and firmer contact on that side, but things seem to be ok there. We'll see.

5. First week at home

2008-07-04T09:24:00.005-05:00

Well, that Friday after surgery is when they finally felt comfortable letting me go home. The swelling had gone down dramatically, but I still felt like I was hit by a train. I had a lot of difficulty getting anything to drink or eat. I was still very weak, and couldn't stay standing for very long. I was surprised at just how bad I felt. The one thing I can say is that taking the pain medication they kept pushing on me was more painful that the pain itself. I couldn't stand the taste of it and it almost made me vomit. So, after leaving the hospital, the only pain medication I took was a little ibuprofen. That was more for my back and neck than anything else. If I sit around too much, my back and neck usually suffer for it.

Well, I slept reasonably well that night, but still not very good. I was somewhat upright in the recliner and that helped with the pain more than anything. I was still very congested, and I used some nasal spray to help with that, but I tried to use that as little as possible. I have a real problem with 'rebound congestion' when using those sprays. They work when I use them, but I usually pay dearly for it the next day with even worse congestion. What I did to help with that was to only spray in one nostril. That way, when I got the rebound, it was only on one side.

As the swelling continued to go down, I was able to control some of my facial and mouth muscles a little better, and eating became easier. I improved fairly rapidly because of it. By Day 7, I was able to go for a half mile walk and I was able to extend that to a mile by day 9. I still ran out of energy very quickly so by the time I got home for the walk I was exhausted and very hungry. It was the night of my 10th day that I had my first real mental setback. I had tried sleeping a little less vertical and woke up sweating heavily with my chest tight and pounding heart. My apnea was back (or never left). I hoped it was just a fluke and the next night it was even worse. I tried sleeping in bed with a couple extra pillows and CPAP, but I got even less sleep that way. The whole reason I put myself through this hell was to get away from CPAP. I couldn't sleep with CPAP before, and I still couldn't. I tried again the next night, but I still had the same problem. With the arch bars, wires and bands, it was even more difficult because my lips wouldn't stay shut. This was probably as close to depression as I had ever been in my life. Here I was, wired shut with broken jaw that might not heal right, face numb, constantly congested, in some pain and many weeks of healing before I could even try to resume a normal life and the surgery had failed!

My wife an I talked about it and we figured it was possible that the swelling might still be causing a bigger problem than we realized, but when you have read so many posts about people sleeping great while still in the hospital after MMA, I felt sure that mine had failed. We both moped around a little for the next couple of days, but we started to accept what was and started moving past it. We hoped that the first follow-up visit with Dr. Viozzi would bring us some encouragement. That vistit would come on Day 15.

4. Surgery

2008-06-24T21:07:00.015-05:00

Well, I spent the last week before surgery getting everything paused with work, or at least everything I could. I also didn't cheat myself on any meals. If something sounded good, I ate it. I knew I was going to have a severely altered diet for at least two months, so I figured I might as well enjoy the last few days of normal eating. One of the things I had been told by all my doctors along the way was that my weight was not an issue with my sleep apnea. I am 6'3" and 265 lbs in the last 6 months before surgery. My ideal weight as far as I'm concerned is about 210 lbs, but I haven't seen that weight since my freshman year of college. Most of my excess weight was carried in the stomach area. But, because of my height, most people were shocked when they heard my actual weight. I am very "big boned", so I do seem to carry the extra weight a little better than most. The most important thing, I'm told, is that I wasn't carrying it around my neck. I have a 20.5" neck, but there is very little excess there. By the way, anything larger than 17" in neck size in men is also another risk factor for sleep apnea. So, a large neck, some faulty bone structure and a little extra weight all added up to an RDI of 90.

My wife an I spent the night in Rochester at a hotel and had a nice "last meal". The place was called 'Martinis' in case you are ever in town. It's in the Kahler hotel and had a short, but very tasty menu. I didn't have any of their famous martinis, but I did have a very tasty Amstel Light.

I checked into St. Mary's hospital at 6:45 the next morning and started the whole prep process. My mom was there, too. I grew up just outside of Rochester, so it was an easy drive there for her. I went through all of the various phase of preparation from changing clothes to getting IVs started over the course of the next 3 hours. I forget when it was Dr. Viozzi came out to make sure I was still wanting to proceed, but I think it was just before 10am. Up to this point, I hadn't been very nervous, so I was expecting my nerves to suffer fairly soon. I was wrong. I got a little nervous, but not even close to what I was expecting. I guess I had done some pretty good mental preparation. Things happened very quickly (for me) after that. I think I was in La-La land within the next 20 minutes.

Well, I don't remember the next 24 hours or so, so I'll fill in the little I know. Dr. Viozzi was a little concerned about the left side of my mandible because he was going to be removing a wisdom tooth there and in the maxilla just above that. He had prepared me for the possibility that I may be wired shut after the surgery if there wasn't enough bone to hold the screws. Well, the maxilla went perfect, the left mandible that he was a little concerned about went perfect, but the right side mandible didn't go so well. The controlled break went the wrong direction and instead of just splitting my mandible, it cracked straight back. At this point, he had three choices. He could put everything back and wire me shut, he could try to fix the break with plates by going in through an external incision and risk killing the bones, or he could repair what little he could without additional invasiveness and back out, wire me shut and see how my body would do in helping fix the issue. He chose the third option and I am glad he did. He said surgeons tend to like to fix things, but he figured my best chances long-term were through waiting and seeing how it would heal. He was still able to advance me the full 10mm on all four points, so that part of the procedure is done. The whole procedure took nearly six hours. At one point, Dr. Viozzi was called out for an emergency. He had just completed my maxilla, so I guess he left at a good time. He came back for the lower half in due time, but it probably added 30-40 minutes to the procedure. It seems that my procedure was longer than what many other people who have had theirs done at other hospitals, but Dr. Viozzi said it would take about that long, so it was expected.

I woke up on Tuesday because they wanted to keep me under and wake me up slowly. They were taking precautions because of my jaw being wired shut and didn't want me to wake up and panic. I had a lot of swelling, which wasn't really unusual, but Dr. Viozzi said some people react a little differently. I was one of those.

Well, lets just say I was in hell for the next three days. I had a tube running from my nose to my stomach to keep me from vomiting. (I had a little problem with nausea from anesthesia after the UPPP) I was still catheterized, still had IVs and the swelling was still pretty significant. The absolute worse thing about this was that tube in my nose. I was stuffed up and couldn't breath much at all through the other nostril. I couldn't get much air through my mouth. I have a mild case of claustrophobia, so anytime my breathing is restricted, I get a little anxious, which made me short of breath, which makes me a little anxious, which....I think you get the picture.

3. Mayo Clinic

2008-06-24T12:08:00.008-05:00

I met with Dr. Viozzi and found him to be a very open, honest and caring doctor. He took the time to answer all of my questions, even though his pager kept going off. So, if you were seeing Dr. Viozzi after me that day, you have me to blame for him being at least a half hour behind. He took a couple of x-rays and then came back and went through them with me. As it turns out, my apnea could possibly be linked to my skull. He explained that as we develop in the womb, our skulls grow first and that once that is formed, our faces grow out and down from there. If the angle from the base of our skull to a point above our eyes is "flatter", all of your facial structures will grow more down than out. This is a very simplistic explanation and I hope it is correct, but you need to talk with the doctor for your individual case.

I had an airway of about 8-9mm and Dr. Viozzi thought that the MMA procedure would have a good chance of 'curing' my apnea. This is where I'll say what every other MMA blogger has said... get a definition of 'cure'. Each surgeon has a different definition. Dr. Viozzi explained his definition before I could even ask as an AHI of less than 20 with a goal of being in the single digits.

One very specific question I asked him was if he were doing a study of "carefully selected patients", would he select me for this procedure. He was pretty confident that he would. The reason that I asked this is that for all of the published results out there for the MMA, almost all them start out by saying "a pool of x number of carefully selected patients". He also told me that if I were his brother, he'd recommend staying on CPAP because there is little risk and it is the best "cure".

Dr. Viozzi also suggested that I go to their sleep lab for a sleep study to make sure that nothing had been missed. I then met with Dr. O who talked to me for a long time about everything including what he thought about the MMA option. He didn't recommend I get the surgery, but he also said he wasn't going to just outright steer me away from it either. I went in for the sleep study later that night and found this sleep lab to be a pretty good step up from the one that I had been in twice before. The results were pretty uneventful and showed that CPAP was curing my apnea, but I had to be drugged to sleep at all with it and didn't sleep long enough with it while drugged.

I met with Dr. Viozzi a couple of weeks later at what I like to call the "You can't sue me after this" appointment. This is where we discussed the MMA in a little more detail, but really focused on the risks. I went into that appointment ready to get on the surgical schedule, but Dr. Viozzi shook me up enough (and pretty easily) that I had considerable doubt creeping in. He could easily sense that and told me he would refuse to even schedule the surgery that day. I didn't try either.

I struggled with the CPAP for a couple more weeks. I knew I wasn't going to be able to stay on the drugs for much longer, either. I tried going off the drugs, but, just like before, it was a total disaster. I did a lot of research over those few weeks but with a new twist. I tried to find cases where the MMA had failed. My definition of 'fail' was anyone who was still on CPAP or had such serious complications that they were worse off now than before. I based "worse off" on their interpretations alone. I only found a couple of cases. One was pretty easy to tell that it was just something that didn't work and the other seemed more like someone who still felt awful but had decided to not find out why. Just disgruntled. I kept going up to Sleepnet.com and I went back to some of the very first posts. One thing I noticed there was that the progression of surgery discussions clearly went from UPPP to MMA over the course of a couple of years. People were 'waking up' to the possiblility that the UPPP wasn't effective and the MMA was showing some very positive results. Not everyone had a picture perfect operation with a perfect cure. There are a lot of people with all kinds of lasting issues. The biggest thing about most of them is that they would do the procedure again knowing that they would have those problems. Everybody's risk/reward ratio works differently, so I would suggest you think long and hard about yourself in that position to determine if it would be worth it.

I finally decided that I was going through with the MMA and I called Dr. Viozzi's office to schedule it. I just couldn't see myself living another 50 years like I was. I wanted the alternative.

A couple of weeks later, I went in for bite casting and measurements. That was a different experience. I had never had bite casts done before. Dr. Viozzi introduced me to one of the residents that was working with him at the time during that visit. We discussed the risks again, but I wasn't unsure anymore. I wanted to take the risk, so we kept the June 16th, 2008 surgery date and that was that. I thought it interesting that part of what the bite casts are used for is to do a "practice" surgery. I don't really know what that all entails but I figured any practice that isn't on me is great practice.

2. UPPP

2008-06-24T12:00:00.004-05:00

The ENT was very optimistic about the procudure called UPPP. (I'm not going to be putting all the technical names for all these procedures. They are all available with a simple search) I had severe apnea with and AHI of around 90. Now, if I had been my usual self and not trusted anything I was told until I could research it an verify it myself, I'd have figured out a different Plan B. I difinitely wouldn't have taken this surgeon's advice and gone ahead with a procedure that had a less than 20% chance of helping someone with apnea as severe as mine. Well, in May 2007, I went through with it.

The first clue that it may not have been a success came in the recovery room. I was still snoring and having apneas when I dozed. It seemed to clear up pretty well in a couple of weeks and I thought my sleep was improving. I soon realized, though, that my sleep was in a severe downhill spiral. The way I describe this stage of my ordeal is that before the surgery, I didn't really know that I had sleep apnea, but after....I KNEW it. My sleep got progressively worse until I was calling up and begging for the CPAP back just so I could try something to get some sleep. I was frantic. So, only 3 months after the UPPP, I knew it was a complete failure. My surgeon got very evasive with some of my questions at that point and I was scheduled for a follow-up sleep study. The result of that seemed to be identical to the first one except that either someone transcribed some of the numbers wrong or something changed fundamentally. I don't know what happened, but I've chalked it up to going to the wrong place for help.

The pulmonologist was convinced he could get me using cpap successfully, so I gave that a try again. I ended up on a series of drugs to try to help my sleep, but none worked very well. I tried weening off the drugs from time to time, but that was usually a disaster. I finally settled in with temazapam for a couple of months until I could figure out what to do. I really gave the CPAP a hard try, but it just wasn't working out. During this time, I did a lot of research on this other surgery called MMA. It is sometimes done in conjuction with a GA. The published success rate seemed pretty high. I got a referral to go to the Mayo Clinic in Rochester, MN. They have a very good reputation in the world for many things, so I figured that they should have someone good to help me. I was armed with a lot of questions and knowledge. Most of this after reading posts at Sleepnet.com. There is a wealth of info up there. It helped me a lot and would recommend that anyone looking for help should go looking there.

1. Sleep Apnea History

2008-06-24T09:42:00.008-05:00

Hello,

My name is Glen and I have sleep apnea..... "Hi Glen" That's about how my first steps down this road started.

Ever since I was a young child, I have had snoring issues. I can remember sitting in my grandma's rocking chair after church on Sundays and falling asleep only to have my older brother start messing with me because I was snoring like Homer Simpson. I think I was around 10 during those times. As I got older, my snoring got worse. I was never a heavy kid. In fact, until the summer after my 8th grade year, I was pretty tall and rail thin. I had a pretty sizable growth spurt over that summer, but I can't put my finger on a time when my snoring got worse. I think it just happened gradually over the course of about 7-8 years. I know that by the time I graduated college, my snoring was almost legendary.

I have never been an early riser but I think that was in part due to the fact that I hated going to sleep. I would stay up watching TV, reading, or anything I could to avoid going to bed. I don't know if that was some sort of clue, or if I just thought sleeping was a complete waste of time....until morning came around. Then I didn't want to get up. I can only vaguely recall a handfull of times when I woke up in the morning feeling like I was ready for the day. I don't know if any of this can be contributed to anything other than not putting my head on the pillow. I do know that I used to sweat when I slept. It wasn't all at once that I noticed this, but I would say that by the time I was out of college, my snoring caused enough exertion to my breathing that I would sweat most every night when I slept.

After college, things seemed to deteriorate fairly rapidly for me as far as sleep goes. It seemed that I was never well rested unless I took 10 hours of sleep. Even then, the effect was only temporary. My aversion to going to bed was still active, but again, I don't know if that was any real sign of anything. By the time I got married in 1999, my snoring was horrible. I know my wife had to be wondering what she had gotten herself into by marrying me.

......A little sidenote here for those who don't already know this. There are many more victims of sleep apnea than those who are diagnosed with the disease. My wife is one of them. I'm sure my friends and family were part-time victims along the way, too. My wife's sleep has been disturbed by my snoring for so long, that she has sleep issues of her own now. I know that because of my disturbed sleep, I was even crankier than usual on many occasions which caused me to treat others in ways that were unfair to them. So, for this one person with this problem, I can't count how many others may have been affected by it all....

It was probably around the time our daughter was born in the spring of 2006 that things started coming to a head. The addition of a child is a stressful event in most lives as it is. Add in two parents who can't sleep in the same room together anymore because of my snoring and things get even worse. We both finally snapped one day and luckily my mother-in-law was there to save us. My wife an I were dead on our feet, we had a house full of family and friends and I had been taking some OTC energy pills to try to keep going. I finally got to the breaking point and had an anxiety attack. Shortness of breath, tightness of chest, couldn't think straight. After our guests left, my mother-in-law sent my wife and I to bed to get what sleep we could and after a few hours, things were better. I quit taking those pep pills because some of the ingredients may cause anxiety.

So, here we were... new baby, and not much sleep and none of it in the same room together. My wife had started to tell me around this time that she thought I was stopping breathing while I slept, but I did't really want to discuss it much at the time. My health was pretty good, so I wasn't too worried. My blood pressure was good, my cholesterol was not too bad, but my weight had been creeping up over the past few years. When I started to think I may have a problem was when I started 'mini-vomiting' in my sleep. At first I attributed it to eating or drinking too close to bed time, but it slowly got worse. Finally, around February of 2007, I went in for a physical. I walked out of the doctor's office with a stack of referrals, one of which was to see an ENT about my loud snoring and deviated septum. The result of that visit was a scheduled sleep study.

During that sleep study, I was awaken after the first 3 hours of sleep to be fitted with a nasal mask. I wasn't very impressed with the sleep techs at this point. Not because they wanted to put a mask on me, but because they obviously didn't want to take the time to find one that fit well. I slept horribly from that point on. They woke me up at around 6:30 and told me I slept so much better after they put the mask on me. They looked at me rather strangely when I told them they were wrong. I met with a pulmonologist later that morning and they put me on CPAP. That's when the nightmare began.

I tried CPAP for about a month. I kept ripping it off in my sleep, waking up because air was escaping my mouth and I still kept snoring. In my case, the pressures that every sleep study had set for me have been consistently been 2-3 centimeters too low. I quickly gave up on CPAP and went back to the ENT to look at other options. This is where I made my first mistake.