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New here with Extreme Apnea
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Curtis Offline

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Machine: Intellipap
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Sex: Male
Location: United States

Post: #1
New here with Extreme Apnea
Hello all,

Back in 2012 during a seizure disorder test at Stanford (I had begun having small strokes and other neuro problems), they discovered that my brain would wake itself up every 20 second or so all night long. It did this every night for the week I was connected to their neuro study machine. So, I was sent off to a sleep specialist also. During the two sleep studies I did at Incline Village, NV, they found I have extreme apnea and gave me an AHI score of 120. They issued me a CPAP machine immediately on the spot and showed me how to use it. I hated the darn thing until I finally settled on some nasal pillows. I'd sleep okay with it, but allergies and colds would make me set it aside and I'd quit using it.

Finally, after returning home from our winter in the Caribbean this June, I went to see my sleep doc again. We discussed the CPAP and how I just could not find a way to use the machine on the boat and how I had been fighting with it on and off over the last few years (no chip as this thing shows some code). He had me promise to use it every night and see him again after two months. So, I did. I wore it every night and slept better, but would still wake up and fight the machine as it leaked and had other issues. I'm a side and stomach sleeper (yes with such a high AHI) so it would always move off and need to be adjusted. He told me about the new Inspire program at Stanford and also talked about surgical options because I was beginning to show other health problems from such bad apnea.

At Stanford, I saw Dr. Capasso. He's a great doc. We went through all the options. He even explained that even with CPAP that some patients, like me, who can't lose weight, aren't sleeping well are still developing type II diabetes and other risks to their lives. My wife balked at all the options until Dr. Capasso and even my doc in Truckee both told her that she would be the one to eventually find me dead as 120 is close to the highest you can realistically go on the AHI. For instance, to get a 1, you must stop breathing for 10 seconds and then breath for 10 seconds. That's 20 seconds. That means you can realistically only score 3 points a minute for a highest score of 130. People talking about higher scores did not have the test done properly from what they said. Makes sense to me and my score is 120. Neither of them had ever seen anyone with a score even approaching that level (that's why I had to go through two sleep studies actually).

So, Capasso set me up with a sleep induced endoscopy, which I failed to be a candidate for the Inspire program. Dammit. His suggestion was the UPPP asap.

I had the surgery Sept 14, and I'll tell you flat out that it is the most painful thing I have ever experienced in my entire life. I've been through quite a bit too. I've been in an explosion, on fire, broken bones, vehicle accidents, broken face from football, power grinder to the mouth and into the nose, multiple kidney stones etc. I thought I had felt pain before, but this. OMG. From day 5 to today, it has been horrific. On top of that, I do not take pain meds usually. The opiates were giving me vivid dreams, hallucinations and flashbacks (I used to be an EMT). I saw a mangled body in bed with my wife and me, a girl in our closet, these little creatures running through the house and all through it, the worst pain imaginable. I spent two days where I seriously thought I was dying. I even said, "they lied. The people who said dying takes the pain away lied." I was laying there thinking this is how you die. It hurts like a mother and you just hallucinate your way away. It was freaky. It still is freaky. I remember wondering when I was going to just black out from the pain. Why am I still conscious? I thought extreme pain made you just back out? Then that's when I settled on that I must be dying. I know. I know. Melodramatic. But, extreme pain and drugs.

My wife asks me if I knew it was going to hurt like this would I still do the surgery? My answer is that I am not sure yet. I can't use the CPAP right now because the pressure would blow out the stitches in my throat. But, I have fallen asleep on my back, which I never do because I stop breathing normally, and I breathed fine even with the swelling from the surgery. The team of docs who worked on me said they removed 3 times the amount of tissue as they do normally. It seems to have made a difference. So, if this surgery can get me where I can sleep positionally without apnea (still very doubtful statistically), then heck yeah. If it get's my AHI down below 60, yes. Because if there is progress like that, I may opt for the less painful, but more aggressive, maxillary realignment surgery next summer when we get back from the Caribbean.

Curtis

BTW-The other benefit is on surgery day my weight was 263 (I'm 6'2). This morning it was 248. Overall my weight is down a lot. Two years ago I weighed in at 298. My goal is to be 220 by the time we leave for our boat in early January.
09-22-2016 09:11 PM
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justMongo Offline

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Machine: ResMed VPAP Auto (S9)
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Location: Калифорния

Post: #2
RE: New here with Extreme Apnea
Welcome

Interesting story. Keep us informed.
I've heard good things about Stanford. I don't know Dr Capassio.

BTW -- would it be too intrusive to ask your approximate age?

Kind regards,

Mongo

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
(This post was last modified: 09-22-2016 10:27 PM by justMongo.)
09-22-2016 10:26 PM
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Cbarrios Offline

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Joined: Aug 2016

Machine: Philips Dreamstation Auto
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Post: #3
RE: New here with Extreme Apnea
I thought I had it rough.

Here is to a quick recovery.
09-22-2016 11:04 PM
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PoolQ Offline

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Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
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CPAP Pressure: 6.2, 15, PS4.0
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Location: Sillicon Valley

Post: #4
RE: New here with Extreme Apnea
ya I mean if you can make it through all that, then I just need to sit down and be quiet. Hang in there and show us how it's done.
09-23-2016 12:41 AM
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cate1898 Offline

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Joined: Aug 2015

Machine: PR System One 560BT Auto
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CPAP Software: SleepyHead

Other Comments: Began CPAP Therapy Sept. 11, 2015. Hx Hypertension, Post Graves Disease, chronic migraines.

Sex: Female
Location: Southern Ontario//SW Florida

Post: #5
RE: New here with Extreme Apnea
Welcome Curtis and best of luck with everything!

APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
09-23-2016 08:16 AM
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trish6hundred Online

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Machine: Resmed S9 AutoSet for Her
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CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #6
RE: New here with Extreme Apnea
Hi Curtis,
WELCOME! to the forum.!
Wow, you have been through the wringer a time or two, haven't you?
I wish you a quick recovery.
Let us know how things go for you.

trish6hundred
09-23-2016 01:49 PM
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Curtis Offline

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Joined: Sep 2016

Machine: Intellipap
Mask Type: Nasal pillows
Mask Make & Model: CA
Humidifier: Intellipap
CPAP Pressure: 10.1
CPAP Software: Not using software

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Sex: Male
Location: United States

Post: #7
RE: New here with Extreme Apnea
Hello everyone,

Thanks for the kind words. Yesterday was two weeks since surgery. I've moved up to some solid food of scrambled eggs and some soups like split pea and other creamy soups. The best news is I've stopped all pain meds. This part makes me happy as I am not a pain med person due to the side effects I mentioned in the original post. LOL. There's still some pain, but the stitches are more irritating that anything. It's like having a hairball.

Next week I see Dr. Capasso next week for my first follow up and will eventually have a new sleep study.

Oh, I'm 54 years old in a couple days on Oct 1. :-)

Also, so far I've fallen asleep on my back a few times and have slept nicely. I have an almost impossible time forcing my tongue back to close off my airway (but that may be because of pain limitations). However, it all gives me hope I may fall in that 10 percent of being fixed, but I'm being realistic.


Curtis
09-29-2016 07:54 PM
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KSMatthew Offline

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Machine: PR DreamStation Auto
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CPAP Pressure: 7
CPAP Software: SleepyHead

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Sex: Male
Location: Kansas, United States

Post: #8
RE: New here with Extreme Apnea
I think that UPPP is considered a success if it cuts your AHI in half, and at 1 year there is a risk that you relapse. It's been about a decade since I looked into it, so the results are probably better now. But once you are healed and get another sleep study I hope you do well. Keep on losing that weight, that should help, too.
(This post was last modified: 09-29-2016 08:33 PM by KSMatthew.)
09-29-2016 08:31 PM
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PaulaO2 Offline
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Location: western NC, USA

Post: #9
RE: New here with Extreme Apnea
The UPPP is almost a temporary fix or a "let's make this manageable" fix. It isn't a cure. Or rarely is.

Our bodies get used to a normal, even if that normal isn't considered a healthy normal. For example, depression. The brain's chemistry says "this is where the valves are to be set". Along comes a medication that resets the valves. All is fine but eventually, the brain manages to move the handles back to where it thinks they should be. This is why depression medications are usually switched around, keeping the brain busy.

So your throat and other tissues have gotten used to being lazy at night. It was easy for them since they seemed to have so much company. The CPAP let's them stay lazy but props them up against the wall. Literally. You've now removed a lot of that tissue but they are still going to want to be lazy. Those muscles we use to swallow are still there and they are voluntary. They relax in sleep just like our arms do. There's nothing you can do about that. Even if they removed enough tissue, those muscles are still going to relax. Will they take everything with them? Will they fully block the airway?

This is my theory so take it as you will. If you pass the sleep test now, do yourself a favor and have it done again yearly for a while, just to keep up with it.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
09-29-2016 09:45 PM
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sleepytimegal Offline

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Location: Iowa, USA

Post: #10
RE: New here with Extreme Apnea
Hi New here with Extreme Apnea, I read your story and found it interesting and a bit upsetting to hear of your dire experiences. I just found out last week my AHI is 57 and was feeling a bit sorry for myself to have 'very severe' apnea. When you said you would like to get yours under 60, it made me realize that I wasn't as unfortunate as I had thought. I really had no symptoms except for having to nap everyday, although, if necessary I could get by without it. And of course the snoring. I'd sleep well, in my opinion, and wake up after 7 hours ready to get up. So, since everything seemed pretty normal, it was hard for me to believe I had 57 events per minute. I wonder how all that can be happening and I think I'm sleeping well. Well, enough about me. Just wanted to tell you that I hope your surgery helped and that you will be more consciousness about using your machine every night. I, myself, would never go on a trip if I wasn't sure I would be able to use my machine. I'm not trying to be critical, but just want you to realize that your life can depend on it. I think you'll find this forum to be very helpful for any problems you might have with leaking, etc. It has certainly helped me, and just to know that you aren't going through it alone helps. Keep at it and a little good luck wouldn't hurt. Sleepytimegal
09-29-2016 10:11 PM
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