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.
Tuesday, June 24, 2008
3. Mayo Clinic
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.
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
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.
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
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.
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.
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