Apnea and will NOT use Cpap

[Doxie 2]

My hubby had the surgery a few years ago. He went into it knowing that there was a 50/50 chance of it helping his sleep apnea, unfortunately he was on the wrong 50%. He still snores horribly just different sounds. He has a CPAP and wears the full face mask.

I had my sleep study in Dec 2007 because I complained of restless legs and my pcm ordered it. I had no daytime sleepiness or other signs of apnea but came away from that experience being told I don't have restless legs (just because I didn't have an episode that night) and that I had to use a cpap. The sleep study was never explained to me. I also have to have supplemental oxygen with it because my oxygen level dips too low when I fall asleep.

I tried to wear it and had built up to keeping it on a few hours a night then quit using it. I had gotten a copy of my sleep study when putting together my packet for the insurance approval. There was a note from the dr that reviewed it and from what I can figure out is that I have a very mild case and mostly need the oxygen, he wrote a note that if CPAP wasn't tolerated that I just need the oxygen and then what pissed me off was that he wrote there was no evidence of restless legs but that I could still need treatment for daytime RLS. My PCM told me none of this. I went into denial about the CPAP and didn't wear it for months.

I got really sick with my asthma in Feb. My oxygen level was so low. My allergist really read me the riot act for not using the cpap w/oxygen. I got a nasal canula from the med. supply company and tried to use the cpap again but was having trouble tolerating it. I was able to sleep with the canula and get the oxygen I need. I am using an autopap right now for 2 weeks to see what levels I need so they can adjust my cpap, I think maybe it's too strong and that's why i can't wear it. I've been doing pretty good with the autopap. I hate to admit it but I can tell a difference when I sleep with the oxygen. It does take some getting used to and I made little fleece covers for the straps that go across my checks. I would still like to have my sleep study explained but I don't think my PCM has a clue. My allergist said that I should do another sleep study after I lose more weight to see if I still need the cpap or just the oxygen. They seem to think that our altitude here complicates things as well. Hopefully when I move back to TX in a couple of years it won't be such an issue.

[serenity55 15]

Don't want to scare you, but there is a chance that your apnea could get worse without using your CPAP. Some suggestions are trying to watch Tv with it on, just to get used to the mask. There really are lots of different ones out there .

Also, when you have lap band surgery, you won't be laying on your side. Just something to think about.

[Cleo's Mom 257]

Doxie: Your post just reinforces what I have always said. Get copies of all your tests results. If the doctor sees it, then you should see it. Don't take a "no one called" to mean everything was fine with a test. Always follow up with a call and always, always, always, get the test results yourself. Don't just let them tell you "everything was fine". Then start a file for all these results. You will be glad you did.

[AngelWhisper 0]

Doxie: Your post just reinforces what I have always said. Get copies of all your tests results. If the doctor sees it, then you should see it. Don't take a "no one called" to mean everything was fine with a test. Always follow up with a call and always, always, always, get the test results yourself. Don't just let them tell you "everything was fine". Then start a file for all these results. You will be glad you did.

This is very true. My dad had a routine blood test done for a physical and had elevated prostate specific antogen levels and NOBODY from the Dr's office called. He found out 3 months later when he went to the Dr. for an upper respiratory infection. I've seen so much stuff just like that working in a pharmacy. People really have to be proactive with a Dr's office. They don't always follow up the way people hope they will.

[wintobethin 5]

Respectfully not true for everyone. I have yet to dissolve a single pill and I have pretty good restriction (in fact going for a slight unfill next thurs). I take HUGE pills just fine. But some do need to dissolve them, not sure why....guess it's a difference in personalities, swallow strength, docs, and esophageal force and structure.

Hay, Monkey! I am in the same "Tree" as you, I have NEVER crushed a pill or taken liquid anything since Lapband surgery! No problem at all. They had me scared to death that my "horse" pills wouldn't go down, huh, no problemo!!!!!!!!

[spud.mama 7]

:blush:Thanks everyone! I am one who is trying to stay in denial about needing the cpap. :sleep: I have to do the test again with the cpap but had to cancel once cuz of money issues. :frown: And still havent done it--tho the money issue is still there I am more convinced after reading here that I need to do it. I am at the point that I hate going to bed at night cuz I toss and turn all night, and unlike the people who don't dream I have extremely WEIRD dreams. :bored: It's time for bed now and I'm dreading going eventho I love my comffy bed. :w00t: And morning takes too long to get here but then I don't wanna get up. :ohmy: My kids say I have "goldfish brain"--3 second memory. And I feel stupid and foggy all the time. :tongue_smilie: What do ya think--do I really need it??

[skep 9]

:blush:Thanks everyone! I am one who is trying to stay in denial about needing the cpap. :sleep: I have to do the test again with the cpap but had to cancel once cuz of money issues. :frown: And still havent done it--tho the money issue is still there I am more convinced after reading here that I need to do it. :bored: I am at the point that I hate going to bed at night cuz I toss and turn all night, and unlike the people who don't dream I have extremely WEIRD dreams. It's time for bed now and I'm dreading going eventho I love my comffy bed. And morning takes too long to get here but then I don't wanna get up. :eek: My kids say I have "goldfish brain"--3 second memory. And I feel stupid and foggy all the time. :thumbup: What do ya think--do I really need it??

I know that I had been fatigued and tired for years. I was willing to try anything. although I slept okay, I slept restlessly, awakening several times a night. I complained to my PCP for years. I have been told that I was depressed, had hypothyroid, too much cortisol, etc. I finally decided that my weight was the problem and that if I lost weight I would feel better. The weight doctor decided to send me for a sleep study. I discovered I had sleep apnea.I feel like a new person! Or better yet, like the person I used to be. It took awhile to get used to the machine but once I got used to it, wearing it feels very coomfortable. sleep apnea is associated with weight gain so now I'm wondering if I had recognized it earlier would I even need lapband surgery?

[twiggysmiff 0]

So I wanted to get some people's opinions on my situation..here it is....

They say I have sleep apnea lol I refuse to believe it. It's very minor is is caused by my weight. I have just recently developed it and even the pulmonologist said loose the weight and it will go away.

So I absolutely hate things on my face and WILL NOT use the cpap machine no matter what anyone says I will not use it. Plus I am just embarassed and will not let ANYONE see me with that horrid thing on. I got it through UPS the other day and it's still in its box, I have already addressed it to go back to where it came from. I intend to ship it back on the day of my surgery.

The only reason I got it in the first place is because my doctor requires you to use it for 3 weeks prior to surgery. I intend to keep it a seret that I am not using it.

So I guess my questions is.....did anyone else not use their machine prior to surgery or have a similar situation? I'd like comments to on what you think! Thanks!

Be careful. Most CPAP machines have a card in it that you take to the doctor's office and they can read the data from it (length of time used, how many nights you used it, how much pressure it used, etc). The doctor may ask you to bring in this card to be sure that you used it.

For what its worth, I have sleep apnea and can't use the CPAP machine. I am claustrophobic and I did manage to get past that and sleep with the machine. What happened next was bizarre. When I use the machine, I had a problem with severely high blood pressure and my ankles and legs swelled to the point of pain and I couldn't wear shoes. The doctors could not tell me why, but now, the machine is gathering dust on the floor next to my bed.

Good luck to you!

[twiggysmiff 0]

wow I never really imagined I would get so many responses!

Let me comment on a few things......first is, I am never tired I am awake all day and do not take naps. I sleep 8 hours each night and am ready to go the next day, I don't wake up with a headache or anything.

second, I did explain to my pulmonologist that I hated things on my face and would not wear this. I did tell him that I'd wear it the three weeks before surgery however, that was the only way I was going to get the surgery.

oh yea and the other thing is....he said I don't have the apnea while I sleep on my side with is 95% of the time. Sometimes I fall onto my back for a few minutes and that is when it happens. Then I'm back on my side and its all good again.

Thanks for your comments I appreciate them all and none of them have upset me so please feel free to continue your thoughts if youd like!

Sew a tennis ball into the back of your pj's so when you roll on your back, you'll roll back on your side immediately. :biggrin:

[twiggysmiff 0]

Hey yall =)

I must have made my original post sound like I was hiding the fact that I was not using it from my doctors. However, that is far from the truth I flat out told him I was not going to use it. He said "of course you know I have to recommend that you do" and I told him I understood that. I told him I just wanted to go through the motions to be able to get the surgery.

You have to understand that I was COMPLETELY shocked by this diagnosis, I have no symptoms of Apnea, I just had to have the sleep study as part of the process my hospital requires. Also, my refuses to use the cpap is not out of defiance, it's the fact that I loose my mind when something comes in contact with me face. I was doing construction last summer and had to wear one of those white masks, within one minute my throat closed and I couldn't breathe I became nauses and had to take it off. I can't even sleep with the blankets near my face. All the time I'm in the car and if it even starts to get a tiny bit warm I start freaking out because I can't breathe and have to roll all the windows down lol. I know it sounds dramatic but that is exactly how it happens to me.

The night of the sleep study with the cpap I cried, literally balled myself to sleep and I had about 3 major anxiety attacks in the middle of the night ripping the thing off of my and throwing it across the room gasping for air. haha I really made that nurse work that night haha.

I can get over the embarasment of the mask.....but I don't know about the other part. I'm frazzled. :biggrin:

I can TOTALLY relate to this and I had a massive panic attack during my first sleep study. The little nasal pieces they put under your nose bothered me and I had a hard time with it. The second sleep study, my doctor gave me 2 Ambien to take. I didn't know a thing!!! LOL I was able to get used to the mask on my face and it did help me sleep, but it caused blood pressure issues and swelling, so I had to stop it.

As for you telling your doctor...you're now saying "I must have led you to believe I was hiding it", but I went back to the OP and you said, "My doctor requires it, but I plan on keeping it a secret and not using it." That sounds like you're not telling your doctor.....Which is the truth?

[HeatherO 7]

Sew a tennis ball into the back of your pj's so when you roll on your back, you'll roll back on your side immediately. :cool2:

Lol, I never thought about that but I bet it would work perfectly. :biggrin:

I am also trying not to sleep on my back, but it is because of late pregnancy and not apnea. I keep ending up on my back . . . probably due to discomfort and an inability to sleep on my stomach any longer, lol. When I wake up from sleeping on my back I feel like I can't hardly walk due to stiffness and sciatic pain if I have to go to the restroom.

Why is it that I never sleep on my back until the one time that I am not supposed to do so??? Life is strange that way.

[ALABAMA 0]

I LOVE MY CPAP!!! I will really hate to see it go when I lose all my weight. It was a pain at first but I QUICKLY got use to it. It makes me take deep breaths that are very relaxing to me. Also - I had heard that people with sleep apnea can have trouble after surgery - as in - going to sleep and not waking up.... I had a friend with sleep apnea die from his apnea (not after a surgery) - that has been enough for me to take things seriously. Good Luck!

[plain 12]

wow I never really imagined I would get so many responses!

Let me comment on a few things......first is, I am never tired I am awake all day and do not take naps. I sleep 8 hours each night and am ready to go the next day, I don't wake up with a headache or anything.

second, I did explain to my pulmonologist that I hated things on my face and would not wear this. I did tell him that I'd wear it the three weeks before surgery however, that was the only way I was going to get the surgery.

oh yea and the other thing is....he said I don't have the apnea while I sleep on my side with is 95% of the time. Sometimes I fall onto my back for a few minutes and that is when it happens. Then I'm back on my side and its all good again.

Thanks for your comments I appreciate them all and none of them have upset me so please feel free to continue your thoughts if youd like!

Hey, I'm not trying to argue a moot point here. It's up to you whether to wear it or not. And honestly, it's no skin off my nose either way. But I would point out one final thing: Because the most common risk factor for sleep apnea is genetic (airway shape), the variable that really changes over time is airway muscle tone (sorry maestrita, until I eyeball that study you referenced, I'm gonna go with the studies I've read). In simplest terms, at age 22 your apnea might be mild......at age 42, it might be a different story.

Plain, Where I agree with your statement about the shape and dimensions of one's upper airway, I don't think your assumptions about the prognosis for patients with apneas necessarily follows. There is evidence that significant and sustained weight loss results in the complete resolution of apneas in approximately 80% of the patients tested

Ok, but don't let the terms of the study bamboozle you. Even if all apneas are completely resolved, the odds are overwhelming that hypopneas will still be present.

when the patients achieved and maintained a healthy BMI. Even with the super-morbidly obese (SMO), as defined medically, a significant reduction in RDI, somewhere near 60% fewer disturbances has been documented. Furthermore, in the SMO, a 55% improvement in blood oxygen saturation was shown, though few of the patients in that range were able to stop the CPAP treatment altogether.

Again, don't let numbers fool you. A 60% reduction in RDI sounds good on paper, but let's look at a hypothetical example: Pt#1 has an RDI of 60 (this means the pt is waking up an average of once a minute. The "normal" value for RDI is 5). A 60% reduction would mean this pt still has a whopping RDI of 24. That's almost 5X the "normal" value. That is still in the range of "pathologically sleepy". Same kind of thing with the oximetry numbers.

I don't have the articles accessible at this moment, but if I get a chance I will come back and add the references so you can take a look. If you're like me, you probably love studying about your subject.

Yes, please do. I'd love to give it a looksee.

Harold, Uvuloplasty alone does not provide resolution of apnea/hypopnea for a significant number of patients. However, it can provide some relief from snoring. Most apnea patients suffer from airway restriction further down the throat than the uvulectomy is able to correct. I am glad your surgery worked for you, and I wish it were indicated for me, as well.

Somebody in a previous post quoted a 50% success rate with the UP3 surgery. Last stats I saw were 40% - 60% success. However, the study that produced these rates defined "success" in an extremely liberal way (I think they considered UP3 surgery a success if they were able to get the RDI down to 10. Um, hello......that's double the normal value, and most insurances will still gladly pay out on a CPAP machine with an RDI of 10). Most of my pts that opt for the UP3 end up coming back for CPAP titration.

I have heard decent stats on an oral surgery called the "pillar procedure", and depending on the severity of the apnea, dental appliances can sometimes prove to be effective.

[BillOh 13]

I haven't read all the replies yet, but I strongly empathize with you. I had mine for more than 3 years and never fully adjusted to it. I did not wear mine before surgery, technically they said to bring it with you, I did not. They did keep me on O2 overnight and I stayed above 94% all night. Once I got to -50 pounds, my snoring stopped and my wife says I breathe normal at night. I had my visit with my sleep doctor and I'm considerably better, but not totally normal yet, he thinks another 20 and I will be. Hang in there.

[drr45 0]

My advice is to forget the surgery and try something else. NOT listening to the experts and doing your own thing is dangerous! I've used a CPAP for a number of years and I didn't know how bad I was until I started using it. Instant gratification. But forget that. You're not interested. You don't have anything to compare the feeling of a deep, satisfying, rejuvenating sleep. Sure, you THINK you're sleeping all night. The onset of apnea is so gradual, you've just gotten used to your condition. It will get worse! And also, I'm sure your doctor would disagree with you and has the clinical proof to stand behind. As far as the surgery is concerned, when you decide that YOU want to do this or that differently, it sounds like you'll take the same route by lying your way to blaming the surgeon on your failure at weight loss. So, save yourself a lot of grief and save the insurance company a lot of money and cancel your surgery. That will allow someone who cares enough about themselves and who can listen and follow the program to get banded in your place.