Surgery?

[Pstars]

The study addresses the viability of surgical intervention for someone who cannot succesfully adapt to CPAP. They aren't a treament center.
If you have no insurance it will range from very expensive to astronomically expensive. If you have PPO type insurance where you can go anywhere, google sleep surgery or similar for your geographic area. You'll find some facilities in the nearest large metro area. If you have an HMO or some similar, restricted type insurance, get a referal from your primary care physician to see an ENT surgeon. You should advise the surgeon CPAP is not working for you, you are suffering and miserable and you want a complete diagnostic review of the defects in your airway (should involve scoping the airway and possible x-rays of some type) and you want a surgical course of action plan to address all nasal, palate and tonge base obstructions. See what the surgeon and tests have to say and go from there.

[Juliebove]

I think you better seek a second opinion because it doesn't help that your having trouble with your doctor. There are indeed treatments for sleep apnea but that's just to prevent it but not totally cure it.
Cosmetic Dentist Fremont Dentist Berkeley

I wish I could, but I don't think there are any other sleep Drs. around here that take my insurance. I will look though.

[Juliebove]

But if it isn't helping, then what's the point?

Prove it - post your sleep study and the current printouts of your data capable machine.

Why haven't you read up to under stand your sleep study? Why haven't you followed up on the issues?

Just why do you think surgery to open your nose to more air is going to help when the cpap machine which shoves air down your throat doesn't help you?

I DON'T think surgery would help. I never said that I did!

I did post my sleep study data. Not a chart, just the numbers. I do not have any printouts. I was never given any, nor was I told what they were.

My sleep study was pretty meaningless because I didn't sleep much.

[Juliebove]

Prove it - post your sleep study and the current printouts of your data capable machine.

Why haven't you read up to under stand your sleep study? Why haven't you followed up on the issues?

I have been wondering the same thing. How many days and hours of use were really accomplished?
This is one time I would like to see some compliance data also.

In the short time I have been here I haven't seen anything but excuses for not using the machine. I haven't seen anything that shows any trying. There is no way anyone can really help if we can't see what is or has been going on.
Geez..... Might be leaking like a sieve. Might be using only 2 hours when used. There is no way to tell.
I really sense that Julie just wants validation for not using the machine. I could be wrong, wouldn't be the first time.
Unfortunately we haven't seen any proof of anything. All we have seen is one excuse after another why "can't" is a major word in her vocabulary.

I don't think the machine is leaking. I can tell when it does, and it usually doesn't. I was using it for 5 hours a night and then when I went back to bed, I sometimes put it back on, sometimes didn't. Didn't notice any difference at all if I did or I didn't, except that sometimes when I didn't, I felt more rested and refreshed.

I don't have any compliance data to show.

[Juliebove]

Julie. I don't want to come across as harsh here but...

You have several threads started over time asking for advice and people have offered many to you, to which you usually reply....I can't, or I won't.

From what I have gleaned through your threads is you don't use your cpap on a regular basis so how can you use intermittant treatment to judge whether it is working or not.

Every one of the suggestions to you for making your home more comfortable (or at least your bedroom) temperature wise were shot down without consideration, the concerns about the phone ringing were shot down.

There comes a time when you need to accept responsibility for your treatment and finding excuses NOT to use it regularly is not the way to do it. Blaming your sleep doctor, and DME for issues out of their control are not the way to do it.

You need to pick the bull up by the horns are accept the situation you find yourself in. If you are honest with yourself, you haven't given cpap a real go yet.

Again, my apologies for sounding harsh but that's just the way I see it.

I *was* using on a regular it up until it got really hot here. The sleep Dr. said he heard the same comments as I made, many times.

I feel I *have* given it a real go, and it doesn't seem to help. My dad says the same for his machine. My brother OTOH sees a real difference with his. I just don't.

[Juliebove]

Julie:

Realize one thing, those that have benefited from surgical intervention don't post here, they move on. If CPAP works for you, great, use it. If not, surgery IS a viable option. If you haven't seen it yet, check out a a new study which fully supports this very issue. Google "Surgery suitable alternative to CPAP for sleep apnea" for the actual study. If CPAP doesn't work for you it's useless. Research Stanford's Sleep Center and their protocol for addressing OSA surgically at the three typical obstruction areas and two stages of surgical intervention they utlilize. Then go see an accredited sleep surgeon/center for their review and suggested plan of action for YOUR particular case. Your particular problem is individualistic to YOU and the course of treatment suitable for YOU is the same.

Reported August 10, 2009
Upper Airway Surgery Effective for Sleep Apnea
(Ivanhoe Newswire) – Anyone who suffers from moderate to severe obstructive sleep apnea (OSA) is probably acquainted with the machinery, the mask and the hoses of continuous positive airway pressure (CPAP) therapy. CPAP can be frustrating and uncomfortable, not just for the patient, but also for anyone attempting to sleep with the patient. One predictable result is short-lived compliance with the treatment.

New research into this debilitating condition offers hope in the form of reconstructive surgery on the upper airway. Researchers report that this surgery holds the same quality-of-life benefits as CPAP, but with more permanence.

The upper airway includes nose and throat (pharyngeal) areas, particularly behind the soft palate and tongue. Reconstructive surgery to treat sleep apnea involves clearing any blockages in those areas that might be hindering breathing.

The Australian authors of the study discovered that among moderate-to-severe OSA sufferers, those treated through upper airway surgery experienced the same level of long-term quality-of-life improvement as their peers who were treated with CPAP therapy. Among the benefits were improvements in snoring, sleepiness, and neurocognitive impairment.

SOURCE: Otolaryngology-Head and Neck Surgery, August 2009

Yikes! That sounds horrible! But thanks!

[Pugsy]

I don't have any compliance data to show.

Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

[Muse-Inc]

...My sleep study was pretty meaningless because I didn't sleep much.

65 mins in mine...enough to know I have severe apnea (many hypops, no AI or centrals thank goodness) and very disordered breathing with significant non-respiratory arousals-awakenings, almost no Stage 3 or 4 (deep) sleep and no REM at all. In the titration portion, I also only slept just 65 mins but it revealed that 10 cmH2) stopped all hypops, so my CPAP was set to 11...typical 1 bump in pressure for a study like mine. "Not enough" or "not deep enough" sleep (as someone else was told) is no excuse for not believing the diagnosis. It only takes enough sleep for them to count the events, compare to your saturated O2, evaluate leg and breath effort, and compare it all to your brain waves...my EEG pattern scared the beejeeus outta me 'cause there were so many episodes where my brain was panicing trying to get me to wakeup enough to breathe deeply enough to survive. Would more sleep have changed anything? Who knows...my brain wasn't going to allow deep sleep to happen. Maybe you should review your entire sleep study and understand what it actually revealed.

[twokatmew]

I'm confused. Juliebove, a week ago you were "craving your machine" viewtopic.php?p=390956#p390956 but couldn't use it because of the heat. Now you say you don't think you need it? When did you last see this doc who treated you badly? What happened in this past week? Have you just decided you don't want to use the machine? Perhaps not using it is why it's not helping....

[Juliebove]

...My sleep study was pretty meaningless because I didn't sleep much.

65 mins in mine...enough to know I have severe apnea (many hypops, no AI or centrals thank goodness) and very disordered breathing with significant non-respiratory arousals-awakenings, almost no Stage 3 or 4 (deep) sleep and no REM at all. In the titration portion, I also only slept just 65 mins but it revealed that 10 cmH2) stopped all hypops, so my CPAP was set to 11...typical 1 bump in pressure for a study like mine. "Not enough" or "not deep enough" sleep (as someone else was told) is no excuse for not believing the diagnosis. It only takes enough sleep for them to count the events, compare to your saturated O2, evaluate leg and breath effort, and compare it all to your brain waves...my EEG pattern scared the beejeeus outta me 'cause there were so many episodes where my brain was panicing trying to get me to wakeup enough to breathe deeply enough to survive. Would more sleep have changed anything? Who knows...my brain wasn't going to allow deep sleep to happen. Maybe you should review your entire sleep study and understand what it actually revealed.

According to the Dr. I have mild apnea. My legs were moving around a lot due to severe cramping from whatever kind of awful bed they had at the sleep lab. I was also told I had to sleep in my back only so I remained pretty rigid so I wouldn't turn over. My arms and legs were cramping quite badly though so I kept kicking and stretching, trying to relieve this. What I really wanted to do was stand up so I could really stretch, but I couldn't do this with all the wires on me.

[Juliebove]

I don't have any compliance data to show.

Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

[Juliebove]

I'm confused. Juliebove, a week ago you were "craving your machine" viewtopic.php?p=390956#p390956 but couldn't use it because of the heat. Now you say you don't think you need it? When did you last see this doc who treated you badly? What happened in this past week? Have you just decided you don't want to use the machine? Perhaps not using it is why it's not helping....

My Dr. is the one who says I don't need it. I did use it once after the heat wave left. After it cooled down, I had a severe migraine that left me feeling the need to throw up. I didn't actually do it, but my fear is that I won't be able to get the mask off in time if I do throw up. I have gastroparesis, so when I throw up, it is very violent and sudden.

I just had my followup with the Dr. and it didn't go well. For one thing, he didn't send me to the sleep lab to have the card read. Why? I don't know. He just asked me how I thought it was going. I answered honestly. The machine doesn't make me feel any better and if anything it makes me feel worse. So he told me to quit using it.

Why was I craving it? I don't know. Maybe the familiarity of it. I don't know. I just feel very torn. Shouldn't the Dr. be able to tell if the machine is doing me any good or not? I would think so. But he seems to be basing everything on how I say that I feel. But as he says, I do have a lot of other medical conditions here that complicate things. So once again, I feel like I am just being passed off to yet another Dr. I see so many specialists for so many things and this just seems to be the pattern. I have yet to be able to find any one Dr. who can address all of my medical problems.

[Froro]

Juliebove. I'm going to quote something you said on the previous thread about heat.

"I can't remember the last time I used my machine". How can you honestly tell your doctor it's not working, or can they check your data if you can't remember when you last used it? No sane doctor is going to tell you they can assertain whether the machine is helping or not if you haven't used it enough to gauge the effects for more than sporadic use over a few months.

Your doctor has told you not to use it now, so you have all the authority you need to stop using what you've been trying to find excuses not to use since April.

I'm exiting this thread now.

[Ruby Vee]

I don't have any compliance data to show.

Open lid on your machine.
Push the < (left arrow) button. Summary Data will show up. Therapy hours is part of the data shown.
How many total hours of therapy?

I won't mess with the arrows. Sorry. I can tend to screw things up quite easily, therefore I just won't do it.

If you "just won't" follow any of the wonderful advice you've been given, why in the world do you keep posting, asking for more advice? It seems you just want to play "Ain't it awful" or some such game.

[Juliebove]

Juliebove. I'm going to quote something you said on the previous thread about heat.

"I can't remember the last time I used my machine". How can you honestly tell your doctor it's not working, or can they check your data if you can't remember when you last used it? No sane doctor is going to tell you they can assertain whether the machine is helping or not if you haven't used it enough to gauge the effects for more than sporadic use over a few months.

Your doctor has told you not to use it now, so you have all the authority you need to stop using what you've been trying to find excuses not to use since April.

I'm exiting this thread now.

That was during the heat, which we don't have any more. Heat is very unusual here. Heat like that anyway.

I didn't tell my Dr. it's not working! He asked me how I felt and I said, "Not any better". And that is true! Also, the reason that led to my getting the machine was loss of memory. That has not gotten any better. From my perspective, I haven't seen any miracles, which I guess is what I was led to believe would happen.

I can't remember when I got the machine. I did say loss of memory. Right? It's really bad. I know it was like winter or spring because it was cold then. I did use the machine then. I know I did. I had the card read. What was read? I don't know. They didn't tell me.