how to decide

gdubos · Joined: 10 Jan 2005 Posts: 2

Hello. Ijust found this message board. I have sleep apnea. My quack doctor initially told me surgery only works 20% of the time and prescribed a cpap machine. The next visit he told me surgery only works 50% of the time. He then refered me to an ENT who said he could help,but I would have to have two operations. The first would be to roto rooter my nose, which would sideline me for a week. The second would be to Cutting my throat which would put me down for three to four weeks. He also said it would be the most pain I ever experienced. When I went back to the quack, he said to get more sleep. I did not assault him. I asked about the pillar procedure. He had no idea what I was talking about. He didn't charge me for that visit. He called the ENT guy who told him he didn't do the pillar procedure and in my case I wouldn't be a candidate because I tested 58 interuptions per hour. The ent said he could do a radio frequency procedure. I just want to get some rest, not listen to the Stones when I open my mouth. I need help on how to decide what to do.

<nawchem> · Guest

I had the nose surgery recently. The first week you can't move because you will bleed like crazy with the smallest movement. Luckily the dr. gave me 3 weeks off of work for the surgery since I have an active job. I was told the total recovery takes a full year. It has been 6 months and I'm about 95%. The only thing I got out of the surgery is that my nose doesn't stuff up when I lie down, no effect on apnea but it probably helps with the cpap.

I have heard some good/bad experiences with the other surgery and would read studies and think hard before I did it. I really like the cpap and would suggest giving it a good try before considering surgery.

gdubos · Joined: 10 Jan 2005 Posts: 2

I've used the cpap for over two years, with minimal improvement. i don't snore as much, but still no rest.

<nawchem> · Guest

2 years is a definitely a good try! I can see why you'd be looking into surgery at this point. Wish I could help more.

frequenseeker · Joined: 27 Mar 2004 Posts: 1209

"Used cpap 2 years, and feeling minimal improvement" - good information, but without the actual data from your nightly results you will not have a clue as to whether you are getting any help from the cpap with apneas/hypopneas, and you won't have anything to guide any efforts in changing things to get better results.
It is a crime that so many people have been stuck with this situation because their doctor and DME don't give them the real service that should have helped you with this about 23 months ago

Please don't give up on pap yet, and please consider giving it a much better try before deciding on surgery. I have been reading the posts here for a year and have seen about three people say they had worthwhile results from surgery.
Not that I am down on surgery, but you can't easily tell if it will help, and some people have had more troubles. And of course there is risk involved. And if you are looking at surgery because you didn't have what you needed in your pap therapy...well, you just should at least have the chance to see what better pap would do for you. Your surgery options could still be open if needed or desired...
Read everything you can on this board and you will quickly get an education. Insist on a machine that gives you data - likely an apap, or another titration study, so you know what you are dealing with and can take some good action.
I felt bad after two weeks of cpap, my doc then gave me a higher pressure, I still felt bad, two weeks later I had another titration study and got a bipap, with no data readout, three weeks after that I still felt very bad and the doc gave me the top of the line VPAP III. I was able to get daily data and have a number of important settings to adjust. Once I figured it out, I had great results, overnight. The point is, my doc kept responding and though I had to go through a process so I could show the ins. co. that I had tried and failed cheaper options, I did keep moving through them.
It's a process that realistically could take someone who learns from this experience 2-3 months. Not years.

Less Sleepy · Joined: 07 Aug 2004 Posts: 3333 Location: Northern Virginia

Tired George, you might do the "roto rooter" nasal surgery first. One poster on this board (name eludes me right now) finally saw an ENT after having no luck with CPAP. Turns out that almost no air would go through his nose and he had a roaring sinus infection. After having surgery and antibiotics to take care of those problems, he is having much better results with his CPAP. The turbanate surgery and septoplasty seems to be helpful, but the UPPP has a miserable success rate and can end up making matters worse.

GCrim21 · Joined: 28 Dec 2004 Posts: 22

It's been over four months since I started CPAP for a few nights and then a BiPAP and now a BiFLEX and I honestly cannot say that it has helped me one bit. I wish I could say otherwise. Like you I get no help from the sleep Dr. and the DME will not do anything unless that dadgummed gives instructions. I am going to do what Frequenseeker suggested and talk my 'regular' Dr. about helping me out so I can get on with therapy.

snork1 · Joined: 16 Dec 2003 Posts: 1415 Location: Kirkland, WA

I am that guy that recently got roto rooted.
The nose reaming will NOT help the apnea, it WILL help the CPAP to work much better IF your nose was causing a problem in the first place. Can you breath easily in and out of your nose while going through normal activities? If the answer is "yes", I wouldn't expect much from nose surgery. If the concept of EASILY breathing through your nose is something beyond imagining, then it COULD do you a lot of good.(but will NOT CURE APNEA).

Did your ENT glance up your nose with a flashlight and make the surgery prognosis? If "yes" ...run away as fast as you can. If the ENT did a nasal endoscopy (fiber optic through the nose down to your throat) AND at least a CT scan of your sinuses, before recommending the surgery, then you might have the right doc.

2 years on CPAP with "only" a sleep doc and DME to "help"? A couple weeks of intensive reading the old messages on this board and asking questions HERE will get your CPAP better dialed-in than that 2 years...even though none of us are "experts", only mere users.

Even my ENT agrees that the throat slicing(UPPP and tonsils) is iffy for results. And the next step which you may or may not need to CURE Apnea is back of tongue trimming which gets really iffy.

Remember all surgery has risks. Mine was 3 hours of surgery between the eyes and up against the brain sack, risky indeed, but the impacted sinuses could have eventually killed me, in addition to a year of every trick in the book not helping make CPAP work for me. I took a week off of work. That was too short by a minimum of 3 days...and then only if you are dang tough. Post-op loss of blood fore several weeks was the biggest suprise. Flushing out blood clots of a size that I was wondering if my liver had gotten in there was quite something.

But I am dang glad I had that surgery. I can breath through my nose now and actually am starting to get CPAP to work.

BTW, I am not FAT, with a bit of 52year old paunch and jowls, but weight does NOT contribute to the apnea. I am actually reasonably physically fit.

Just remember, everyone is different though.

Guest · Posted: January 11 2005 Post subject: how to decide

You asked about the Pillar Procedure. I'm not an expert, but I went through it in Nov.
This procedure may be and I say may be helpful to primarily people who snore due to a vibrating pallet. As far as a cure for apnea, in my opinion it isn't. Restore has made some claims with regard to this being a cure for apnea, but the Dr's who perform the procedure will tell you they cannot predict results and apnea "cures" have been in very mild cases of apnea.

I hate CPAP and came close to going through all the surgery possible to end this, tonsils out, deviated septum fixed, uvvvp, in reading what people experienced in this forum you get people saying it was the best thing they ever did to people saying it was the worst thing they did. Some had great improvement, some got worse! I ran from an ENT who suggested all these surgeries with only a 10 second look up my nose with a light. You want a serious evaluation before going through this kind of surgery.
Rick

ishapira · Posted: November 14 2007 Post subject: hate cpap

If you hate your cpap read this sleep and health article

http://www.sleepandhealth.com/modules.php?name=News&file=article&sid=130