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25yo w/ Severe OSA Consid. Surgery

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Posted by mattyt on November 10, 2009 at 15:07:42:

I'm not really sure if I have a specific question but I feel sort of lost, I suppose. I've only told a few of my closest friends about my condition, and I am feeling quite lost and alone at the moment. In my googling, I came across this forum and thought it might be worth posting.

I guess a little bit of my background might be necessary. About 6 or 7 years ago, my then-girlfriend noticed that I was choking while I slept. At the time I was about 160 pounds and in good health and shape for a 19 year old (I am about 5'7"); during high school, I participated actively in several sports and was in good shape but I gained some weight during undergrad but was still active and even fenced at the collegiate level. Being the daughter of a doctor, my then-girlfriend suggested that I get a sleep study done. After having a polysomnogram, they determined that I had mild sleep apnea and I started undergoing CPAP treatment with a chin strap. At the time, I was unable to keep my mask on for very long (no more than a few hours a night) and the constant explanation to people who would visit became difficult (I was in a dorm room after all). Furthermore, I didn't seem to be having any symptoms from my Sleep Apnea as I wasn't tired or fatigued, and I didn't even really notice anything adverse. So I stopped CPAP treatment and returned my machine after about 6 months. In hindsight, I should have taken this much more seriously when it was just mild. Fast forward to about a year ago.

I have a new girlfriend (who I met after I went off of the CPAP machine). She noticed my remarkably loud snoring, but seemed to have adjusted to it okay. I had mentioned that I was diagnosed with mild sleep apnea, but it never seemed to be much of an issue. Since graduating from undergrad, we have been long distance so I guess there's less opportunity for her to notice any apneic events, even if she were to notice them. I am now about 185 pounds (about 25 more than I used to be) so I am certainly heavier, but didn't give much thought to my sleep apnea, which was mild after all.

For the first year of law school, I noticed diminished energy and general fatigue, but I chalked it up to the rigors of law school. During my the winter of my second year (last November), however, I felt extremely tired all the time, and it didn't seem to be getting any better. Poor sleep has been something I've been dealing with for what seems like forever (the last time I remember having a good well-rested night was when I was a little kid, probably around 7), but the associated sleepiness and tiredness was becoming unbearable. I was falling asleep during class, and it was affecting my studies. So I thought of getting my apnea checked out again, and scheduled a consultation. After meeting with an ENT and a sleep specialist, we talked about my previous diagnosis and my difficulties sleeping and functioning. Under the assumption that my sleep apnea was still at or near the mild levels, my facial structures made me a good candidate for septoplasty and/or turbinate reduction, but she recommended that I get another polysomnogram done because it had been so long since my last one.

So I had my sleep study in February or March of this year; my RDI is 72 with oxygen desaturation around 82%, which makes me a 25 year old law student with severe sleep apnea. During the study, the nurses administering the test had to call-in a emergency room doctor because they were worried about me and he authorized a CPAP on the spot. After talking to my sleep doctor, she was very worried, and put me immediately on CPAP therapy while explaining my surgical options. This was about 7 or 8 months ago. After going to a cardiologist and running a full battery of tests (ekg, echo, respiratory tests), my doctor mentioned that septoplasty and turbinate reduction weren't even on the table any more, and that my main surgical option with my facial structure would be maxillomandibular advancement. She explained the surgery to me, and to be perfectly honest, it freaks me out. Since then, I have been on CPAP at various levels. I have a REMstar Auto M Series with C-Flex; she started me off at 12 cm H2O pressure, and it has been adjusted to 17, and most recently to 20 cm H20 pressure. My compliance is at or near 100%, with the only caveat that my doctor has suggested sleeping earlier (because I am a law student, I can't usually afford to sleep earlier than 12AM on most nights if I want to finish my work). Thankfully, my blood pressure has gone down since being on CPAP (it was is in the 150s/90s when I first went on CPAP and has been around the 120s-130s/80s since then), but my tiredness and fatigue have remained. None of these settings seemed to help as I was still incredibly tired. After several check-up meetings, I went on Provigil, which had almost no affect on me whatsoever. I feel like a waking zombie, and can't seem to get any restful sleep. I'm perpetually exhausted and it has been this way for the entire duration of my CPAP treatment. I don't know what to do.

For a while, I've been pushing it out of my mind, mainly because (in May) I needed to study for finals and then do work during the summer. This past Monday, however, I had what felt like a panic attack. I woke up not breathing (with my CPAP on) and my heart racing. The CPAP machine was abnormally loud -- probably because it was working extra hard to try to get me to breathe, and my heart felt like it was jumping out of my chest. This episode really shook me up, so I've started to consider surgical options again, and I'm not entirely sure what to do or even what to look into. I feel incredibly lost. I have an appointment with my sleep doctor on Thursday, and I've scheduled a consultation with Dr. KL in Palo Alto for Thanksgiving (I am going to the Bay area for thanksgiving to see my girlfriend).

I guess my question is this: have any of you out there had similar experiences, and if so, what steps have you undertaken? I am only 25 years old, and I am worried for my long-term health and well-being. After doing some searching, I've begun to realize that sleep apnea (and severe sleep apnea even) are very rare for someone of my age. This research also showed that severe sleep apnea increases my risks for cardiovascular disease and congenital heart failure, some times even resulting in death. Basically, I'm just scared out of my mind and I'm not sure what to think, feel, or do.

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