25yo w/ Severe OSA Consid. Surgery
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25yo w/ Severe OSA Consid. Surgery

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Posted by mattyt on November 10, 2009 at 18:24:52:

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. K. L. 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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