I'm a nub

[WarWraith]

Hi there. My name is Warwick, and I live in Melbourne, Australia. I also play World of Warcraft, where if you're new to the game, you're a "nub" (aka newbie).

Well, I'm new to this game. Several months ago, my doctor asked a question that's changed the course of my life. "Do you snore?". I do, like a truck. The follow up was "do you stop breathing while you sleep?", to which my wife replied "yes, he does".

I got booked for several appointments bouncing between the respiratory lab and the ENT surgeon, (which took several months waiting), then got booked in for a sleep study, which I had in late December. I came across the board then, but didn't register because I had no useful information.

I saw the ENT surgeon on Friday for the results of the sleep study. He ordered it because he figured my golf-ball sized tonsils were probably causing OSA, but the red tape prevents him ordering their removal without a sleep study to prove it.

All I know at this point is that I'm having "70 events per hour", which they told me is "severe sleep apnea", and I'm being booked in for a turbinoplasty and a tonsillectomy. He explained that due to the size of my turbinates and tonsils, CPAP at this point would be virtually useless because of the amount of pressure required to get the air past my giant tonsils.

So here I am. Falling asleep at work. Waiting to hear back as to when my surgery is scheduled for. Public system, so looking at least 6-12 months. Then recovery, THEN I get to move to the respiratory lab to get fitted (?) for CPAP.

I'm also suffering depression, which my doctor and shrink both think is caused by long tem sleep deprivation resulting from the sleep apnea. Not to mention my other health issues.

I'm fighting a rising sense of desperation, because it seems I'm becoming increasingly sleepy during the day, and while my boss is understanding, I'm concerned for the continued viability of my job - particularly given that there are other designers working here who DON'T fall asleep at work.

So, hi.

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CPAPopedia Keywords Contained In This Post (Click For Definition): newbie, CPAP

[RipVW]

Hello & Welcome Warwick! Glad you found this forum at the beginning of your CPAP journey--took me over a year, a year of ineffective results. Thanks to cpaptalk.com, I've been getting REAL therapy and good rest for 4 months. Be sure to click the "Yellow Lightbulb" to quickly locate lots of useful information.

[Slinky]

Welcome to the forum, Warwick. Whew! I "have" to remember NOT to complain about the USA's health care system for at least the next 24 hours! A 6-12 month wait for a surgery for a condition that is life-threatening? True, not as life threatening as a cancer but still ..... Ah well the price we pay, eh? Just know we share your frustration and we wish you well!!!

[kteague]

Hello and welcome. If I understand correctly, you did not get a titration study - the ENT doctor decided the tonsils would prevent effective cpap treatment? If it is indeed going to be months before surgery, could you see a sleep doc or pulmonologist to order a titration study to see how much you could be helped by cpap treatment? Isn't an ENT recommending surgery and refusing to even try cpap a bit of a conflict of interest? Or at least not in line with their field of practice. If possible, I would want to consult with someone who specializes in cpap therapy for a balanced perspective. The severity of your apnea merits doing SOMETHING besides just waiting.

Keep us posted on how things progress.

Kathy

[sombu]

Hi Warwick,
Welcome, like you I too am a nube. I had a sleep study done in November and had about the same numbers, 74 events per hour. I've been reading the posts here since I got my results; they really helped me understand the range of people's experience with OSA. I just got my machine and have been on it 10 days now. No "miracle cure" that some have experienced but I am definitely starting to feel better. The depression is lifting, as is the clouded thinking and I’m not feeling as much like I'm walking underwater. I agree that you would do well to try to get on cpap. I saw an ENT last week because of my unusually large uvula and recessive jaw, I asked about the various surgeries available. He was dead against them because of their low rate of success. I've read that even when surgery is initially successful the patient can end up back at square one over time. His point was that cpap is the gold standard treatment for OSA; it's non invasive, relatively inexpensive, relatively painless and adjustable to changing conditions. See if you can get on cpap before the surgery, its starting to work for me.

Michael

[alnhwrd]

Welcome to this forum! I am relatively new to this too and am certainly not a medical professional of any kind, but it seems like ANY CPAP therapy would be beneficial. I rang in at about the same level as you are, with 78 events per hour, so I know exactly how you are feeling. Depression, fatigue, nodding off during the day despite every effort to stay awake (while driving, too, I hope you aren't behind the wheel much!), and that feeling of desparation you describe as you realize its not going to get better on its own. I had actually found a couple of places I could get away and hide for a few minutes at work so I could catch a nap and get through the day. It was especially frustrating to me, as it must be to you, once I convinced my Dr to schedule a sleep study for me. That was in August, and it took until mid-November for me to finally get my CPAP.

All of these problems have melted away once I got on CPAP. So expect that they will for you, friend, once you get "on the hose". If I were you I would bug my doc again to see if you could at least try a CPAP machine for a month or so and see if it does you at least some good. Either way, hang in there and feel free to come back for support here any time.

[ozij]

Welcome, WarWraith.

You're in a tough spot now - please take comfort in the fact that it's temporary.

I saw the ENT surgeon on Friday for the results of the sleep study. He ordered it because he figured my golf-ball sized tonsils were probably causing OSA, but the red tape prevents him ordering their removal without a sleep study to prove it.

Golf sized tonsils can undoubtedly obstruct your breathing when you sleep - and more the one member of the forum has has their tonsils taken out, and found they need far less pressure on the cpap.

I don't think an ENT recommending throat surgery is "in conflict of ineterest", I would certainly prefer to have my tonsilectomy recommended by an ENT and not by a dermatologist.

Maybe, based on your sleep study results they will find something to give you the temporary relief till the operation - do make your medical team aware of how you're feeling now, and the repercsussion it has on your work, and possible driving safety.

The high pressure needed to barge through your tonsils obstruction will be no picnic - and will not assure good results. A post surgery titration (that's the professional word for finding the right cpap pressure) will give different results than the one pre-surgery.

Based on what you told us, if I had to chose where to put my energy, I'ld concentrate on having the operation moved to as soon as possible - If you have any info on your oxygen desaturations during the sleep study you may be able to use that. Remind everyone that in the hospital, people are give suppelemental oxygen when they drop below 90% saturation (that is ninety percent, no mistake).
Don't discuss it as a sleep problem - its a breathing problem - you are getting choked nightly. Try to share this aspect with your boss: Your major problem is not lack of sleep, it's not being able breathe when you sleep - so your brain - very wisely - interrupts your sleep to make you breathe. Your are being snapped out of sleep in order to breath at the rate of 70 times an hour. Thats how bad your breathing is when you try to sleep.

Your doc and shrink are probably right about the depression too - research has shown its high prevalence among people with sleep apnea - they're not in any way waving you off.

Hang in there, it will be much better once you've had the operation. And hang around here, and keep us posted of developments.

O.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP