Marc's Public Blog - OSA, Obstructive Sleep Apnea and MMA Surgery

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This page has a few of my blog posts about my issues with OSA, Obstructive Sleep Apnea, which basically means not being able to breathe at night and having restless nights, night after night.
Because my sleep apnea scored low but somehow the impact on me was fairly high, it took a while to diagnose, and I tried several things before eventually getting Maxillomandibular Advancement Surgery (MMA) to fix my airway for good.

I made this summary page after the fact, so it starts with a few sleep studies I likely did 5 years later than I should have.

Table of Content for osa:

More pages: December 2011 May 2011 March 2011 December 2010 August 2010 July 2010 January 2010 December 2009 July 2006 April 2006 November 2005 March 2004

2011/12/17 Zeo Raw Library Simple Callback Example
π 2011-12-17 01:01 in Linux, Osa
The MyZeo folks definitely deserve credit for releasing open firmware and instructions on how to interface with their bedside Zeo device via a custom made serial port:

Since I had been working on arduino, I happened to have one of those 3.3V FTDI USB-serial converters, and was able to make a cable that connects my bedside Zeo to my server closer via a custom cable going through my existing Cat-5 wiring.

The example code they gave is however, while very fancy, not that simple to borrow from for a more simple application that simply needs to keep track of the sleep stage.

So, after finding the relevant info, I compiled the code below, which I'm posting for others to use (you can also download it here: zeo raw data code sample).


# This is based off the Zeo Raw Data Library at the bottom of # # This script is a much simpler version of how to log basic data than the cool # and pretty GUI_Viewer from # This script is an easier example to steal from for simple logging/integration.

# By Marc MERLIN <> / 2011/12/17 # License: GPLv3.

#gandalfthegrey [mc]$ ./ # 2011-12-17 12:19:10: HeadbandDocked # 2011-12-17 12:19:15: HeadbandUnDocked # 2011-12-17 12:19:22: Sleep state: Undefined # 2011-12-17 12:19:52: Sleep state: Undefined # 2011-12-17 12:20:22: Sleep state: Undefined # 2011-12-17 12:20:52: Sleep state: Undefined # 2011-12-17 12:21:22: Sleep state: Undefined # 2011-12-17 12:21:52: Sleep state: Undefined # 2011-12-17 12:22:22: Sleep state: Undefined # 2011-12-17 12:22:52: Sleep state: Undefined # 2011-12-17 12:23:22: Sleep state: Undefined # 2011-12-17 12:23:52: NightStart # 2011-12-17 12:23:52: Sleep state: Awake # 2011-12-17 12:24:22: Sleep state: Awake # 2011-12-17 12:24:52: Sleep state: Awake # 2011-12-17 12:25:22: Sleep state: Awake # 2011-12-17 12:25:52: Sleep state: Awake # 2011-12-17 12:26:23: Sleep state: Awake # 2011-12-17 12:26:32: HeadbandDocked

# System Libraries import time import sys

# Zeo Libraries from ZeoRawData import BaseLink, Parser from ZeoRawData.Utility import *

# User customizable variables port = '/dev/ttyUSB0'

class Callbacks: def logtime(self): return time.strftime("%Y-%m-%d %H:%M:%S: ", time.localtime())

def SliceCallback(self, slice): if slice['SleepStage']: print self.logtime() + "Sleep state: " + slice['SleepStage']

def EventCallback(self, logtime, version, event): print self.logtime() + event

if __name__ = "__main__": link = BaseLink.BaseLink(port) parser = Parser.Parser()

callbacks = Callbacks()

# Add Callbacks and Start the Link link.addCallback(parser.update) parser.addSliceCallback(callbacks.SliceCallback) parser.addEventCallback(callbacks.EventCallback) link.start()

# Infinitely loop to allow the script to run continuously while(True): time.sleep(5)

2011/12/14 Interesting Stanford Sleep Study and comparing data with Zeo and personal SPO2 logger
π 2011-12-14 01:01 in Osa
My sleep has definitely improved this year. I do occasionally wake up for no good reason, or have nights that are shorter than they should be (wake up without an alarm and can't fall back asleep), but I would say that my issues of having 8H of sleep and waking up tired the next day are mostly gone.
This is good news from the OSA standpoint.

Now, because I need to wear a retainer every night anyway after I got my teeth moved, I figured I might as well get a sleep appliance again (think of a retainer with hardware that forces your bottom jaw forward) and improve my airway and room for my tongue when I sleep, just in case that helps further.

I was due for a sleep study at Standford, so we did a split night, first half withe sleep appliance and second half without it. While it's true that my sleep is not the same at the begining of the night vs the end, my sleep is usually deeper at the beginning of the night.

Apnea results

Long story short, my sleep was clearly worse with the sleep appliance than without. My AHI/RDI was 15.5 along with SPO2 drops with the appliance (That counts as apnea), while it went down to an almost normal 9 without SPO2 drops without the appliance.

So, there are 3 possibilities:

  • My sleep wasn't as good at the beginning of the night than the end, maybe because I wasn't doing well with all the wires and unnatural sleeping position (I remember dreaming a lot, which I never ever do in my first hours of sleep). My Zeo and the stanford report both showed I was in and out of deep sleep, and hit a good bit of REM around midnight. This means that if we had done the sleep study the other way around, the results could have changed. Still, the first part of the night does show desaturation and more SPO2 drops than the second part, both on the stanford graph and my own SPO2 recorder, and the stanford sleep graph really shows a bit of apnea (not hypopnea) for the first part of the night.
  • My sleep appliance *really* makes my sleep worse. It's unclear as to how since it's meant to do the opposite, but maybe my tongue isn't as happy with the little extra space it takes in my mouth.
  • However stanford computes the apnea score isn't that accurate or relevant to apnea. I don't think that's the case, their data looks very accurate and mostly matches the data I took separately from them. While I am pretty convinced by now that the Stanford test does influence the results, my own SPO2 sensor also seems to show that I may have gotten more consistent better SPO2 readings than they did. I'm not sure if their tech correctly excluded each and every reading anomaly on their graph vs my own recording which was much more consistent.
  • So let's have a look at the stanford graph, knowing that I removed the appliance around 03:00 but took almost 30mn to sleep again after that (and got up once to drink around 03:20):

    Clearly, things get better after 03:20, although my sleep was so disturbed around 03:00 that it shows a lot hypopnea without the appliance on, supporting my guess that the test itself is also messing with the results in my opinion.

    Stanford vs Zeo

    I brought my Zeo sleep monitor and the tech allowed me to wear it on top of their sensors to record the night on my phone while they were recording it themselves.
    Let's compare the two (note that the Zeo monitor which consolidates stages 1 and 2 as light sleep, and 3 and 4 as deep sleep):

    Having a quick look the Zeo does a reasonable job, even if not perfect:

  • it does consolidate data compared to the stanford graph, but for a home appliance, that's good enough.
  • it did however miss some period of awakeness at 02:30.
  • it also claims I was in REM around 03:10, but stanford's better sensors say I was in light sleep bouncing back to awake (which Zeo picks up afterwards. Generally Zeo is known not to do a super good job between light sleep and awake at times).
  • at 05:30, Zeo says I was in deep sleep for quite a while, Stanford disagrees, I apparently just barely touched stage 3 a few times.
  • Zeo has a quick explanation on their consolidated stages of sleep, and what each means and more articles on sleep stages.

    Verdict for Zeo? I'd say it wasn't bad considering, especially since it is designed to smooth and average data, while Stanford is meant to show raw data.

    Stanford vs Bluetooth Pulse Oximeter CMS50EW

    This brings us to my SPO2 saturation. I used a CMS50EW finger clamp SPO2 monitor which actually worked a bit more reliably than the stanford sensor which dropped signal a couple of times during the study.

    The drop around 03:20 is because I god unhooked, but the drops at 03:00 (to 60%?) and later around 06:00, look like monitoring issues. It seems that the tech who did the report did reject them as such.

    Here are the dumps from my own monitor for that night:

    My graph, first part of the night, with sleep appliance
    My graph, first part of the night, with sleep appliance

    Stanford graph
    Stanford graph

    My graph, second part of the night, without sleep appliance
    My graph, second part of the night, without sleep appliance

    Comparing the results, my monitor did show the drops at 23:35, 00:55, but it missed 01:25 and 03:00. I'm not sure who's right there, you'd think Stanford obviously has more sensitive equipment, but I also think it might be too sensitive. I think their sensor might show big drops when it'd bumped wrong, or the analog plug is touched.
    At 03:20, I was unplugged so that drop is expected. After that, the big drops around 06:00 seem to be bad data which my own monitor did not record.
    Because my own recorder was built in and did not rely on wires that would be messed with when I move, I actually think I got better SPO2 readings than they did. Too bad it's soo uncomfortable to wear and requires a good amount of tape to make sure I don't have it drop off my finger, or move enough to affect its readings.


  • My study is still very perplexing. While I am not fully certain that the stanford data recording was 100% accurate, at least for SPO2, I still agree that the data shows that the first part of the night was worst than the second, which is the wrong way around compared to expectations (I should have had less apnea the first part of the night with the sleep appliance/mouth piece).
  • The Zeo monitor did well enough compared to what I expected out of it. It gets a pass :) (and actually gets better than pass if you consider how unobtrusive it is).
  • The CMS50EW did really well. If only I could get its data wirelessly from linux, but its drivers suck so badly that it can barely talk to windows. What a shame...
  • I am feel like Schroedinger's cat, being observed at stanford definitely influences my night and therefore the results. They really should reconsider their apparatus for something simpler depending on what needs to be measured. If I'm only here for apnea, give me just the sensors for that and use a much smaller device (which should be wireless) and let me sleep on my tummy and turn around freely.
  • what a mess :)
    what a mess :)

  • I'm not sure if I can fully consider that my AHI/RDI is now under 10, but if so, great! :) Actually if stanford counted those SPO2 drops around 06:00, and they were wrong, then my score gets even a bit better. But really, it's hard to say. I feel like there could be a variance of up to 5 points doing the same study 3 nights in a row. That's not very feasible though since Stanford is the most expensive hotel I've ever slept at :)
  • This is why I've been working on my own recording at home so that I can get as much data as I can over several nights and average that out.

    2011/05/12 Putting my Mobsendat Board to work to review my Rematee Bumper Belts
    π 2011-05-12 01:01 in Arduino, Osa
    Since my sleep apnea turned out not to be fully cured by my MMA surgery (it helped, but it wasn't entirely enough), the two other known fixes that do not include CPAP are to stop my tongue from being lazy and roll back in and partially my airway, and sleep on my back, which causes the previous point to be worse.

    Funny thing though is that I am used to falling asleep on my tummy (I don't fall asleep easily on my back), but then I will turn on my back while I'm sleeping, every single night. When I half wake up, I'll go back on my tummy and when I sleep again, go on my back again, making my apnea worse (mind you, sleeping on my tummy is not so good for my neck muscles and spine, but I can deal with that). One would say that I should sleep on my side, but that's an unstable position for me and I don't stay there long.

    This is where rematee comes in: I got the Rematee Bumper Belt.
    It is a belt with air pouches that you put on your back and that are supposed to stop you from turning on your back at night. I figured I'd give it a shot, but I soon found out that I quite obviously turned on my back anyway and woke up sleeping on the belt, which hurt my back a fair amount and just gave me an even worse night ("obviously" due to back pain and waking up on my back). One is supposed to wear that belt under the armpits, but for me it didn't make a huge difference, except for where the resulting back pain would be.

    This was discouraging, but I thought I'd give it another shot and got the next size up from rematee. My size is 36, so the large belt with 3 smaller air pouches was technically a little bit too big for me, but my rationale was that once I have the momentum to turn on my back, a few air pouches in my back aren't going to stop me, and apparently I stay sleeping on them and just get a back acke. It made sense at the time that if the air pillows spilled over to my side a bit, they would be more likely to stop my initial rotatioin to my back.

    Long story short, some testing showed that I still turned on my back with the 3 pouch belt. I didn't do detailled testing between the two, but while it seemed to work slightly better, it wasn't good enough.
    At that point, I came to wonder if things would work better with wearing both belts. Long story short is that yes, things worked better with both belts. My suggestion to the designers however, is would for the large belt to have 2 big pouches on the outside to provide maximum leverage against body rotation, and a smaller pouch in the middle to fill the void (the extra large belt does have 3 large air pouches, but that one is just too big for my body).

    both belts
    both belts

    So the big question, is how do you get quantitative data on this? Well, I just happened to be working on an arduino microcontroller board that had a built in 3 axis accelerometer amongst other things. While it was originally meant for attaching to rockets and location tracking with GPS, I figured I could also use it to simply track my body position at night, so I wrote some code to do that (and log it both to the sdcard on the board as well as send the data wirelessly via Xbee to my computer so that I don't have to pull out the card and read it every day).

    You can read this page on Xbee Power Consumption on my Mobsendat Board for details on the board I've been using but basically I get this end result from the board:

    "2011/05/24 06:20:04",,X:0.11,Y:-1.00,Z:0.13,V:4.97,left,rssi:0(DC:2),assoc:843(avg:842)
    "2011/05/24 06:20:09",,X:0.10,Y:-1.00,Z:0.13,V:4.96,left,rssi:0(DC:3),assoc:843(avg:842)
    "2011/05/24 06:20:14",,X:0.04,Y:-0.54,Z:-0.90,V:4.92,down,rssi:903(DC:0),assoc:843(avg:842)
    "2011/05/24 06:20:19",,X:-0.05,Y:0.39,Z:-0.93,V:4.96,down,rssi:903(DC:0),assoc:841(avg:842)

    The important part is the "left" which changed to "down" (Y axis went from -1g to less than .5, and Z went from 0 to -0.9g). I then have a script that parses the output and gives a summary for each night which I then enter in my detailled spreadsheet.

    gandalfthegrey [mc]$ ./scan_file night63_twobelts_home_sun.csv 
    up,     down,   left,   right,  unkwn,  pos changes,     hours sleep
    11.4%,  52.6%,  26.9%,  09.0%,  00.0%,   19 pos chg,     7.7 H sleep

    the microcontroller and battery pack fit nicely inside
    the microcontroller and battery pack fit nicely inside

    what it looks like inside
    what it looks like inside

    And the results are that I slept an average of 26% of my night on my back without belts, 13% with one belt, and down to 7% with both belts. On one side, this is encouraging, although on the other side, it's a bit eery that I still manage to sleep 7% of my night on my back, either by rotating the belts just enough, or by plain sleeping on them. You'll however see if you check the detailled spreadsheet that with the belts on, I have many nights when I didn't sleep on my back at all, and that the average gets messed up by a few nights when I slept more than 20% of the night on my back. It is possible that the optiona shoulder straps will help fix that.

    So how much better is my sleep? That one I don't have quantitative numbers for since I haven't been able to get an SPO2 sensor that I can interface with yet, or easily measure my breathing patterns vs my body position (I did use nose canulas in other take at home sleep tests and I tended to rip them out by sleeping on my face anyway).
    While I don't have exact data, my sleep did feel better with the belts, I also know that my apnea is worse when I'm on my back, so it's fair to say that belts help. How much exactly? Not sure yet, I'll get more data on that later hopefully. I also have to note that my data isn't perfect because at the same time I had to wear a heavy dental piece at night that kept my teeth from moving back to their old place (this is related to my post MMA surgery dental works). I was able to stop using that bulky mouthpiece at day 51, and my sleep improved noticeably at that time.

    So while the data is not perfect since I at least changed the mouth piece part during the samples, here's my summary spreadsheet, and the detailled spreadsheet.

    Interesting bit I got from the data are: I tend to flip-flop about the same amount regardless of whether I have the belts on, and outside of the amount of time on my back, the belts didn't change other sleep parameters I was measuring:

    Position:backtummyleftrightunknownhours sleptposition changesSample Count
    No Belts26.24%49.93%19.44%3.35%1.03%7.4615.0812
    3 cushion belt around chest13.00%51.83%32.07%2.83%0.30%7.4212.507
    both belts6.94%55.91%32.18%4.26%0.67%7.6714.1937

    2011/03/23 Braces Out And Sleep Apnea Surgery Recovery Timeline And Notes
    π 2011-03-23 01:01 in Osa
    I finally got my braces taken out after almost a year. Not a moment too soon :) I still have a mouth piece I need to wear to keep my teeth from moving out of their new places, but basically everything is in place now and I think it's fair to say that the recovery is 100% complete.

    Now to be honest, I considered the surgery recovery complete after I had fully recovered feeling to my chin (that was after a bit less than 6 months), but with the braces out, it's now 100% complete.

    I was also recently asked how long it took me to recover from MMA surgery right after the surgery itself.

    Basically, it went as such:

  • I was mentally able to work after about 2 weeks (at that point, I didn't have to take the drugs which required me to rest every so often, anymore). I was however able to work most of the day after the first week, I just was a bit drugged up and still needed more frequent naps.
  • 3 weeks after surgery, I acted as pilot in command of a plane I flew to Edwards airforce base (as private pilot, that was not for work). Doing the radio calls was actually the hardest since talking was still a bit difficult/painful with the mouth still mostly shut with rubber bands.
  • 3 weeks is also when I started cheating a bit more and eating soft foods (that was slightly premature and I wasn't quite supposed to do it but things like quiche worked fine).
  • By then, outside of it being difficult and somewhat painful to talk for more than a few minutes, I was otherwise fully able to do anything I wanted (outside of things like running which would shake my jaws).

  • After 5 weeks is when The rubber bands came out. I gave a 1H talk at a linux conference in Boston just after that. It was a bit hard, but I made it.
  • By then, I could eat pretty much anything I wanted outside of stuff like breaking hard chocolate with my jaw, or other kinds of hard caramel/candy.

    That's about it.
    As for how well did it work, well it did help. Unfortunately I was one of the few cases for whom apnea didn't fully go away after the surgery, despite a very successful surgery. It kind of sucks, but at least my sleep is better now (even if not perfect).

    2010/12/20 Post Surgery Sleep Study
    π 2010-12-20 01:01 in Osa
    It had been almost 6 months since I got my MMA surgery, and I was curious to get my new sleep apnea scores. Obviously I knew that I was sleeping better now since I was doing pretty well with no sleep appliance, but knowing the score was still good.

    End result: my new AHI/RDI is now 12. The score itself is not very impressive to be honest (i.e. not so good), but I do feel better with that 12 than the 12 I had when I started 5 years ago.
    Part of it is that Stanford is very picky on what they consider apnea now, raising scores compared to 5 years ago, and I'm guessing the other part is that my brain probably deals a little bit better with occasional reduced flow than it did before (i.e. less waking up and not feeling rested).

    Anyway, it could be better, but it's pretty good as is. I guess that's what matters.

    2010/08/22 Hospital Prices
    π 2010-08-22 01:01 in Osa, Public
    After a totally ludicrous $4000 bill the one time I was stupid enough to go to the ER for 4 stitches, a shot, and a few bandaids, I was not optimistic on the hospital bill for my recent surgery.
    At hand was: a 5H surgery with related staff and supplies, 1 night in the ICU (which I'm not quite sure I needed since I never was in a critical state, but I suppose better be safe than sorry if money is no issue), and one night in a regular hospital room (all in all I stayed a bit less than 48H).

    So, what was the bill? Indeed, it was over $93,000 for just the hospital (my surgeon bills separately, and I may also get a separate anesthesiologist bill and potential lab fees).
    While I realize that world class surgeons should get paid for their skill, and hospitals don't run just on good wishes and fresh water, they still cost over 5 times what I'd pay in France for similar service (minus maybe things that would be considered unnecessary).

    Now the "fun" part is where the insurance has pre negotiated prices and decides that things are really worth less than what the bill says. From there it goes from $93k to $16k!
    Now, $16k is not cheap, but feels not as unreasonable as the first bill. What's disheartening though is that it's likely people without insurance who get billed full price and maybe get a measly 25% discount in the end.
    I don't work in a hospital, but I really do wonder how they get to quote such outlandish prices and what happens to people who don't have insurance that will refuse to pay their rate and negotiates the prices way down.

    Oh, if you add "supplies", it adds up to $26k billed. I really want to see what supplies I got for $26K worth.
    Even over $1650's worth of drugs is steep, but of course that starts with drug companies charging pretty ridiculous prices (which Cigna mostly fully paid).

    Anyway, there is a lot of things to fix in the medical industry, but I suppose that's no news to everyone :-(

    In the meantime, I can thank Cigna PPO for making this experience mostly a non event financially for me.

    2010/08/19 MMA surgery, 7 weeks later
    π 2010-08-19 01:01 in Osa
    Ok, this update is going to be boring, but I'm considering myself fully recovered. I can pretty much eat anything at this point, and except for my chin still being somewhat numb (it takes months for it to come back fully apparently), I'm pretty much back to normal.

    All that is left is to move the teeth back to a location that makes sense for my new bite. Unfortunately that will likely take a year or so, but oh well...

    Ah, yes, my sleep. It's definitely better than before, no question about that, although it'll likely take another month or two before I get official scores from a sleep study.

    2010/07/27 MMA Surgery 4 weeks later
    π 2010-07-27 01:01 in Osa
    I guess I'm due for a quick update.

    I'm doing a lot better, I can now chew soft foods (quiche, soft bread (not baguette)), so I've been mostly eating unblended food for the last week. It's not super varied, mostly sandwich bread with paté, soft cheese, or fish eggs, but eh, I love that stuff anyway :)

    I tried eating some pizza today and it was borderline but worked (the rule is that if I have any jaw pain or soreness afterwards, I shouldn't have done it). But that doesn't beat having been pilot in command of a small plane to fly to Mohave after just 3 weeks after surgery. I was a bit sore from talking on the radio, but it worked out.

    Sleep is not perfect, but much better than it was before surgery for sure. It's supposed to improve more, so we'll see.

    2010/07/13 MMA Surgery, 10 days later
    π 2010-07-13 01:01 in Osa
    I got a few Xrays, so I thought I'd post them. The last one is the most interesting since it's post procedure. The interesting part is how far Dr Li was able to move my bottom jaw (15 to 20mm) and the fact that left and right were not moved the same amount because my jaw and bite have always been sideways, and he had to move one side more than the other to correct that.

    The X-Rays also shows that the back teeth were moved a bit forward compared to the front, but the entire jaw was moved a lot more than just the offset change between top and bottom, as the front jaw was moved forward too (just less than the bottom since moving it too much would not be aesthetically pleasing).

    does show that my upper teeth were way in front of the bottom ones (not because of the teeth as much as the jaw).
    does show that my upper teeth were way in front of the bottom ones (not because of the teeth as much as the jaw).


    after (check the arrows showing where and by how much the bottom jaw was cut and moved)
    after (check the arrows showing where and by how much the bottom jaw was cut and moved)

    It's been about 10 days, I've been feeling about as good as normal for the last 3 days:

  • I sleep pretty much normally now.
  • no more pain meds.
  • no more day naps and I can hack/work all day.
  • Dr Li has been changing my rubber bands for weaker ones, so I can open my mouth a bit now.
  • I don't need the mouthpiece I had that was stopping me from talking, even with my teeth closed. As a result, I can now mostly talk (a big plus obviously), even if I'm not supposed to talk much.
  • Things that are still missing though:

  • No feeling in my bottom lip/chin still: it takes a couple of months for the jaw nerves to recover from the stretching and pass feeling impulses again
  • I can open my mouth a bit, but still not chew food, so it's blenderized food or things like a square of chocolate I can melt on my tongue.
  • Sure, I'll be happy when I can eat normal food again, but I'll have to be patient. In the meantime, I'm at least enjoying being able to work/hack again (working on home projects).

    Oh, for those still wondering why one would do something as seemingly stupid as getting their jaw sawed and re-fused, this paragraph from this informative knol (article) says it all:

    Untreated OSA has been estimated to cost the United States an excess of several billions of dollars per year to treat the medical complications of the disorder. Persons with OSA are considered to have an increased mortality risk associated with compromise of the cardiovascular (heart and major arteries) and cerebrovascular (major vessels of the brain) systems. The risk for suddenly dying of heart problems has been shown to be increased in OSA patients when they sleep. Further, the brain arousal which is typical of each obstructive episode causes brief sleep fragmentation which is usually unrecognized by the person suffering, but in fact can lead to a loss of restorative sleep, even though the person is in bed and "sleeping" for many hours. The combination of repeated sleep disruption and decreased oxygen to the brain during sleep likely contributes to the characteristic and sometimes severe daytime sleepiness of OSA. Associated mood changes including feeling depressed, as well as lack of energy, and failure of memory and concentration, all may occur. The poorly controllable sleepiness of untreated OSA is considered to cause the United States thousands of lives annually in motor vehicle accidents.
    While all of these medical problems are most likely to be found in association with severe OSA, even mild OSA (for example, less than 10 obstructive episodes per hour of sleep) has been associated with an increased risk of having or developing some form of heart disease compared with the risk of persons without OSA.

    (for reference, I was getting close to 20 obstructive episodes per hour).

    2010/07/01 Jaw Surgery Day: Maxillomandibular Advancement Surgery
    π 2010-07-01 01:01 in Osa
    For those who didn't know, I've been suffering with sleep apnea for about 10 years now, and increasingly so. First, I had my tonsils removed, and a few sleep studies in between, including my last one to see why my sleep appliance wasn't really working too well anymore.

    Anyway, after having tried a bunch of other things for the last 4 years, noticing that things are getting slowly worse over time, and getting mixed results with CPAP which I just didn't want to rely on for the rest of my life anyway, MMA surgery was pretty much the only logical choice left.

    Now, it is involved and one does have to look at it as an investment: 6 or so weeks with your mouth wired shut and not being able to eat any and then quite little solid foods. Oh, and there is the no talking for a while part too.

    Anyway, I did look at the other options carefully, and tried most of them and after my sleep appliance, the best working one for a while started not being enough, and I started getting sick again 3 times in a row in a 6 week period of time, not counting the many days when I didn't feel rested and sharp, MMA surgery it was.

    Luckily, I live 20mn from one of the best surgeons for this procedure in the US, Dr Kasey Li has actually done and written a lot of research in this domain and performed hundreds of such operations already, so I knew I'd get the best outcome possible with him. This is also when getting a PPO ended up being the correct choice over an HMO: I got to pick my surgeon and Cigna is going to pay everything (close to $100k I hear) outside of my $3k out of pocket deductible for the year. Quite frankly, for this kind of surgery, it's cheap.

    So, the details on how the surgery went:

    First, this I had to get braces to get my from and bottom teeth angled in a way that maximized the amount of moving the bottom jaw while moving the top one as little as possible (moving the top one too much does not look nice on your face whereas my bottom one was too far back, so moving it forward was actually a good thing).

    Anyway, once the teeth had been angled enough, I went to Stanford on July 1st and was under 2.5H later, likely being hacked up somehow :)

    Apparently, I'm a cheap date for anesthetics, so while I'm not quite sure what happened, after the procedure was over, I was moved directly to the ICU and by the time I came back, my intubation tube had already been removed and I had a hard time keeping my face straight and my eyes focussed (actually one of my eyes is still less open than the other, likely due to how puffed up my face is).
    I could count fingers shown at me, but obviously I didn't look quite right until a bit later when I woke up a bit more an apparently regained more face/muscle control.

    I was a bit surprised by how my throat was hurting almost as much as when I had had my tonsils removed 4 years prior. Apparently, the intubation got my throat very irritated and it took a bit over 24H before I could swallow liquids without taking pain meds first (not as bad as the tonsils operation though).

    The first night at the ICU wasn't so great, which is understandable. I was obviously still a bit traumatized from the procedure and ICU recovery rooms are the loudest places ever: they are filled with machines that have very annoying and loud alarms of all kinds that kept going off literally all night: I've never seen anything so trigger happy and even with earplugs, it was hard to get much sleep.

    The next morning, I was moved to regular care as soon as they had some room for me there. I was able to have breakfast so to speak which was really just flavoured soup, apple juice, tea, and some sherbet I had to melt before I could use the syringe push it between my teeth that were wired shut.

    I guess I shouldn't have been surprised by how much my face had swollen up due to the procedure. On one side I lost about 5 pounds from little food intake and my face looks like I just gained 60lbs :)
    48H later, I was home after having stopped at Dr Kasey Li's office where he examined me, cleaned my nose (he also operated on my nose to help improve the airway, why not while you're at it), and removed the couple of stitches on my cheeks after the small holes had had to make for the operation itself (they are already not visible).
    I was pretty impressed how Dr Kasey Li is pretty much his own oncall over July 4th weekend and basically stays reachable himself (not some 3rd rate doctor while he's at the beach) should I require somewhat emergency help during the weekend. Mind you, I would do no less myself in his shoes, but I've found that I can't expect that level of service and dependability as much as I should be able to expect it. Therefore Kudos to him!

    A few pictures of my face puffing down slowly over time:

    At this point, my main issue is actually keeping my nose clear because I can't breathe through my mouth, and trying to shove food between the teeth with a syringe (Jennifer tried to make some soup, but it was too thick and its particles clogged up the few holes between my teeth and required a power water jet to clean/remove). So for now it's going to be odwala juice, slim fast shakes and protein powder shakes.

    Food isn't super exciting for now
    Food isn't super exciting for now

    My only surprise so far is how I lost all feeling in my chin and lower lip, as if I had had a very long lasting dentist shot. Dr Li says it's normal and it takes a while to come back (while could be over a month though), but that's likely only half-surprise so far.

    5 days later, I only had a single nap. My face is slowly getting back to more reasonable proportions, I can now mostly drink from a glass without having to use a syringe to squirt behind my back teeth (big plus), and the hardest part is likely for Jennifer not to be able to communicate much with me since I otherwise can't talk (I'm otherwise naturally a man of a few words and use Email and IM all day long, so I hardly noticed a difference :) ).

    As days go by, Dr Li will replace the rubber bands that keep my teeth closed and allow them to open up just a bit more every time, eventually allowing for some very soft foods to go through as opposed to a 100% liquid diet for now (which strangely I don't mind too much even if it's only been 4 days so far).

    Hopefully in a few weeks I'll be able to speak a little bit since for now, I can't at all due to the plastic piece between my shut teeth.

    It's hard to see how much better I breathe right now since I can't breathe through my mouth, and my nose is still very clogged up due to the small operation I had in it too to improve the airway, but the few times I got a chance, I could definitely tell that the extra 1.5cm of forward room in my throat make a huge difference for the amount of air that can go through when I lie on my back. As far as I can tell, I should be just fine when everything is back to normal. Yeah!

    (update1) got a followup appointment 6 days later and all the wounds are very clean. I saw an after X-Ray and it was pretty impressive to see how much moved forward. I guess that explains why my face and jaw feel so sore from being stretched forward like this (which is not like how a "normal person" would be, but I just wasn't born that way).

    2010/01/27 Dealing with OSA, obstructive sleep apnea
    π 2010-01-27 01:01 in Osa
    Some of you already know that I've had sleep issues, probably since at least 2000, 10 years now. It took about 5 years for me to decide that it was bad enough that I should do something about it (i.e. it wasn't so bad, but it was increasingly nagging and robbing me of a quality of life, a little bit at a time) and for the last 5 years.
    I'm actually a fairly mild case compared to other patients, but it impacts me enough (usually randomly) that I want to do something about it.

    RDI: respiratory disturbance index, number of complete cessations (apnea) and partial obstructions (hypopnea) of breathing occurring per hour of sleep. More than 5 is not normal, bigger is worse.

    REM, NREM RDI: REM and non REM RDI indexes. REM sleep is when you dream, and when the body is mostly paralysed which makes sleep apnea worse since the muscles and tongue relax, which in my case will cause the tongue to go back and further close the airway.
    It is still not well understood how important REM sleep actually is, but it seems to have somewhat important needs, some most likely linked to memory.

    Oxygen blood saturation (SO2%) is vital to good health and proper body functions. Normal range is 95-100%. 90% and below is considered not good. Here are some details:

    85-95%: zone of minimal sensory impairment
    75-85%: zone of minimal mental impairment
    65-75%: zone of increasing sensory & mental decrement
    55-65%: zone of potential collapse

    Results are below.
    (TAP3 means my sleep appliance, or retainer like device that keeps my bottom jaw more forward when I sleep wherewas notch means how far said appliance is pushing my bottom jaw forward)

    RDI REM RDI NREM RDI avgSO2% minSO2% #1 2005/05/11 11.9 18.8 11.1 96% 87% before surgery (mary sleep study)

    #2 2006/10/11 11.8 35 7.3 97% 88% after tonsilectomy (stanford sleep study)

    #3 2007/09/17 7.6 9.2 2.2 96% 81% TAP3 notch 1 (stanford sleep study)

    #4 2009/10/27 7.0 10.3 6.1 97% 93% w TAP3 notch 3 (take home study)

    #5 2009/10/30 15.4 31.7 10.9 96% 91% w/o TAP3 (take home study)

    #6 2009/12/14 17.2 19.1 10.5 96% 90% w TAP3 notch 3 (stanford sleep study)

    Some notes:

  • #1 was my first sleep study to see where I was at and from which I decided to have surgery to improve things (tonsils removed to make more room in the airway, and improvement of my nose airflow too).
  • #2: Stanford was more precise in 2006 than the first place I had my sleep study at, which could half explain why having my tonsils removed didn't actually help my scores at all, but with those results, the surgeon admitted that in my case the surgery may not have helped me too much (it was only a 40% shot in my case anyway).
  • #3 shows some improvement from the sleep appliance. That was good news.
  • #4 and #5 were taken with a sleep at home test which isn't nearly as accurate as the stanford tests but still do show that the sleep appliance is clearly improving my scores, the only question being by how much and whether the resulting scores are good enough (which is all relative).
  • #6 is my last sleep study. That one is actually disheartening: the scores are about as bad today with the sleep appliance as without 4.5 years ago (even if the scores aren't quite on the same scale since stanford has now gotten better at sensing even smaller problems, yielding to higher scores).
  • What now?
    I have had CPAP recommended to me more than once, which is basically a respirator-like device that shoves air into your nose via a tube while you try to sleep. I'm personally not interested in that, I don't want to sleep with a machine for the rest of my life.
    There is also provent which is a passive device that makes breathing out hard and helps your airway being more open. It is unfortunately just a small improvement at best, and my airway and OSA problems are only going to get worse with age, so this is just delaying the problem just a bit longer.

    What's left is MMA, which basically involves sawing the top and bottom jawbones and moving the entire jaw forward to where it should have been in the first place. This is really the only way to improve my airway since my problems are really linked to my bottom jaw being too far back to start with, and my airway being too small as a result.

    Since I already know a local surgeon who is likely one of the best in America (stanford is where many of the world specialists are), it seems that this is just the logical next step for me to take, and I am looking into it now.

    2009/12/08 Sleep Study and Sleep Appliance
    π 2009-12-08 01:01 in Osa
    It's been 4 years since my first sleep study and about 3 years since my last one.

    I've not been too happy with my sleep quality recently and my doctor is also wondering if my sleep has been responsible for my being sick more often (with yesterday's cold it's now 3 times in 8 weeks again).

    After doing a take at home sleep study which confirmed that my sleep appliance that moves my bottom jaw forward when I sleep is actually helping, but we're not sure whether it's helping enough, or not.

    this forces my bottom jaw forward when I sleep and opens my airway better, helping sleep apnea
    this forces my bottom jaw forward when I sleep and opens my airway better, helping sleep apnea

    We however decided to do another real sleep study at Stanford to get better data and an professional opinion. The location changed from Stanford to Redwood city, but the equipment is pretty much the same:


    2009/12/08, looks surprisingly the same
    2009/12/08, looks surprisingly the same

    Needless to say that it's not that easy to sleep with all this stuff. I slept close to 8H which is impressive, but had a pretty bad sleep quality and feel like crap today :)

    I'll know in 2 weeks or so the results and recommendations.

    See more images for Sleep Study and Sleep Appliance
    2006/07/10 Airway Surgery at Stanford (Tonsils removal and more)
    π 2006-07-10 13:22 by Merlin in Osa

    After sleep studies and doctor/specialist appointments, it was finally time for Surgery at Stanford by a specialist in the area.

    Before the surgery on Wednesday, I wasn't allowed to eat anything that day, or drink much at all, with surgery that eventually happened around 17:00 made for a long day. It took about 60mn and another 30mn for me to wake up. In that time, the surgeon removed my tonsils (amydales) to help with my restricted airway at night, straightened the inside of my nose and removed some extra tissue that wasn't needed so that could breathe better through it.

    Recovery wasn't a piece of cake though. Once the anesthesia had worn out, I realized that my throat wasn't happy at all, to the point that I just wouldn't want to swallow my own saliva, so I started to spit it out. The pain meds I was given just didn't seem to do much good and I ended up sleeping a few hours with my mouth opened and tilted over a cup so that the saliva could drip out of my mouth. That way, I was able to sleep a few hours.
    The next morning, I was ok as long as I didn't try to swallow anything, but that wasn't a long term working plan (I was on an IV so that I wouldn't dehydrate since drinking just a slip was extremely painful). They gave me more regular pain meds (oxycodone), and they just did not help.

    At that point, we went for the next level up: a 75mg shot of demorol. Boy, did that feel like horse tranquilizer: I couldn't stay awake and alert more than 20-30m at a time, and would do weird half awake dreams and stuff, but I have to give it credit that a few hours later, I was able to start swallowing some amounts of liquid. It was still painful, but at least it was doable (and that was the condition of my release and being take off IV: the ability to self-hydrate).

    After that, I got home on Thursday and basically took it easy while trying to drink a bit when I could. By Friday, I could drink mostly what I needed and eat a few bits 30mn after taking pain meds (giving them the time to kick in).
    By Sunday, I was mostly off pain meds and while my throat is still sore right now, and I can't just eat anything easily, or even open my mouth wide and chew properly, my current state is quite manageable. I still take one or two naps per day though, and use the rest of the time to work on things around the house that I've been neglecting for too long.
    And the upside is that between my recent backpacking trip and the forced diet, I temporarily lost almost 10lbs. Yeah!

    2006/04/28 Stanford Sleep Clinic
    π 2006-04-28 20:47 by Merlin in Osa

    After a 5 month wait, yesterday I finally got my appointment in one of the best places in the US in that field (and many others). My last update was in november, and it just took that long for me to get my appointment (after having to cancel the one I had in January since it fell in the middle of my diving trip in Australia).
    Long story short, it was fruitful: I brought my sleep study, saw a couple of specialists in 30mn, and they basically told me the following things:

    • my airways close when I sleep, so I wake up, gasp for air, and fall back asleep. When this happens 150 times/night, this makes for a bad night of sleep
    • I stop breathing for 3 reasons:
      1) my nose gets swollen inside due to allergies, so in addition to having my allergy shots, I should use a nasal spray to help with the allergies
      2) my bottom jaw is too far back, and therefore my tongue it too close to my airways when it relaxes, and it can even close them. Ironically, I had my jaw pushed back a bit with orthodontics to align my top and bottom teeth. Unfortunately, this is now messing with my ability to breathe
      3) the shape of my tonsils isn't ideal, so it makes for a small airway, and it's especially smaller when I lie down on my back, relax and let my tongue and jaw muscles relax and come back, further closing the said airway
    • I should sleep on my side or tummy. Tummy is bad for my vertebrae and my neck, but I'll take that over repeated poor nights of sleep. Side, I'll have to get used to, it seems unstable to me :)
    • There are 3 surgery options, including a couple of begnin ones.
    • I can also breathe with a mask and forced air induction (cpap).

    Now, I have to see some surgeons for what my surgical options are, and in the meantime, I should totally stop sleeping on my back. I did that last night, and it already seems to have helped.

    I'm a bit frustrated that my previous doctor wasn't able to tell me that from the results I already had, and that it took 5 months to get proper suggestions out of existing results, but if I had gone to stanford to start with, with the backlog they have it would probably have taken just as long anyway, so in the end it comes out to being more or less the same.

    Anyway, it's good to have some answers, and I'll know more soon.
    2005/11/06 Sleep Study
    π 2005-11-06 10:23 by Merlin in Osa

    Current Music: AVB - ASOT 222
    Current Mood: Argh :)

    Saturday night, I had an "interesting" night. I went to a sleep study, which basically going to a building where I got all wired up (lots of sensors all over the body), and tried to sleep.
    Mmmh, sleeping with all that crap on was somewhat challenging, but it at least made for a fun picture
    End result: inconclusive, I have mild sleep apnea, and I snore, which I already knew. To find out more, I'll have to go to the Stanford sleep center and the next appointment is in 2 months. Lovely...
    Oh well, at least we checked that I have normal lungs (albeit a bit smaller than average, but not that much), and nothing really obviously bad. I guess I'll know more in two months
    2004/03/09 7H/night
    π 2004-03-09 06:34 by Merlin in Osa

    This is a resurrected post I made years ago, which was probably my first indication that I wasn't sleeping well. At the time I had no idea why I wasn't sleeping well. The sleep regimen below ended up being a futile effort but I guess my doctor back then didn't know about/think about sleep apnea and sending me for a sleep study.

    Current Music: Not Yet
    Current Mood: Too early...

    So, I had issues with having bad sleep, where I'd wake up after 9 hours and still be tired.
    My doctor helped me fix that by getting on a 7H/night sleep regimen, which forced my body to actually sleep when I was in bed.
    Overall, it's worked fine, except that when I get behind on sleep, I'm now more or less unable to sleep more than 7H/night (which ended up being the case for the last 2 nights even though I was completely exhausted and even took an ambian to hopefully help, except that it didn't).

    I'm kind of ticked that I first woke up around 05:30 and got up less than an hour later considering how tired I was yesterday (and that's an understatement), as I had gone to bed around 11:15, but I'll see how today pans out...

    Oh, I'm secondary oncall this week, so any page my oncall buddy doesn't get will wake me up (yeepee), but in better news I finally got my old trusty thinkpad back from IBM with a brand new plastic shell to replace the half cracked one that I used to have.

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