surgery whos had it and results

battlin_blazes · Post by **battlin_blazes** » Mon Dec 19, 2005 4:22 pm

hello all, been a while since I've posted any questions but still can't get my apnea under control over a year now!! started seeing a new Dr. and he wants to try surgery. curious of others results he tells me 60-70% get relief? so what do the people that have been down this road think about surgery? My thoughts at this point in the game if I can get my mental focus it will be well worth it. I was diagnosed with severe obstructive apnea and its been living hell since then (Oct. 2004) I am mentally out of it with the severe headaches dizzy foggy brain dead etc etc. surgery worth a shot or should I run fast? (if I can find the energy) appreciate your feedback, Rich

Linda3032 · Post by **Linda3032** » Mon Dec 19, 2005 6:28 pm

Rich. It seems to me that the "new Doc" might be a little hasty - plus you didn't tell us what surgery he is suggesting. Here are a few questions you might answer and the forum might better give you their ideas:

1. What kind of surgery?
2. What equipment do you have?
3. Is your xPAP capable of giving you compliance reports? Ex: My Remstar Auto has a smart card that stores data. Reports can be printed from that data for the doctor/patient to analyze.
4. Does the doctor think your titrated pressure is correct or has he scheduled a new sleep study?

I'm not saying surgery is wrong at this point, but I certainly would look at other areas as to why it's difficult for you to be compliant - there is usually a reason.

There are several different kinds of surgery - "under the knife", laser, and somnoplasty. I'm seriously considering getting Nasal Turbinate Somnoplasty to help my breathing. Not that I think it would correct my apnea, but simply because it would be nice to breath through my nose during the day.

Anyway, hope that helps a little on things to consider.

stanta · Post by **stanta** » Mon Dec 19, 2005 8:28 pm

I first had a uvulectomy eight years ago because I couldn't adjust to the masks that were the only option at the time. I was about dead when it was done and had success with it for about 6 years and then symptom started coming back.

After my next study I tried the breeze and I've been on it since. This doctor also did a rinoplasty to straighten out my nose and a turbinectomy to improve my nose breathing.

Would I go through the first again? NO. I was in pain for a month and couldn't eat and barely drink for the first three days. Masks and machines have come a long way since than and I would go strictly machine if I could.

battlin_blazes · Post by **battlin_blazes** » Tue Dec 20, 2005 12:21 pm

he wants to do both the nasal and throat surgery, I've had five sleep studies over the last year and they can't seem to get me right. I started feeling good on the apap and it was taken away and have not been right since but I can find no one to put me back on an apap which is what I wanted to try.

ozij · Post by **ozij** » Tue Dec 20, 2005 1:31 pm

For some online suppliers, an Rx for a CPAP is enough for you to buy a Auto as well. If you started feeling better on APAP you shouldn't give it up -try cpap.com, look for another doctor. According to the New England Journal of Medicine (a very respected journal) UPPP is not the treatment of choice for sleep apnea. UPPP might also make future use of xPAP more difficult.

Don't go for an operation just because you can't find a doctor who'll give you a prescription for an APAP - that is absurd. Surgery is irreversible.

O.

Guest · Post by **Guest** » Tue Dec 20, 2005 3:44 pm

Don't go for an operation just because you can't find a doctor who'll give you a prescription for an APAP - that is absurd. Surgery is irreversible.

I agree with this 110%, I do think the nasal surgery would be a good idea at this point may help with the constant stufiness. however I'm not sold on the throat surgery at this point on the other hand its been over a year now and I need to get my body some kind of relief. I'm more concerned about the long term affects this is having on me right now and really think if it buys me relief for 5-6 years maybe some weight loss after feeling better may go a long way to help keep it away? I don't know its a gamble at best. I'm 6 foot 245 lbs. so yes room for improvement and this dr seems to think that would go a long way. But several dr.s later the apap is out of the question as far as dr.s in this area are concerned. I've tried over and over again to get an apap even for six months to give me a chance to feel good and lose some weight but no one will even consider it. even been watching ebay but it looks like they have killed that market off as they are no lnger there to be had. So what do you do, stay miserable or roll the dice on surgery? suffer? plane ticket to a dr that will get you on an apap? I dunno just need it under control body is feeling really stressed out to the point of days that I think I will fall over dead and I hate to say that at 35 but its reality.

battlin_blazes · Post by **battlin_blazes** » Tue Dec 20, 2005 3:46 pm

^^^ thats mine and the first line was a quote screwed that up sorry^^^

ozij · Post by **ozij** » Tue Dec 20, 2005 5:40 pm

Maybe I wasn't clear enough - from what I understand you can send your Rx to cpap.com for instance, and buy an autopap based on that simple cpap perscription. I didn't mean ebay or yahoo.

This info is based on my reading of posts - I live outside the US and can't have a machine sent here, so I never tried it.

If it was me, I would contact cpap.com - hosts of this forum - ASAP.

Good luck!

O.

Linda3032 · Post by **Linda3032** » Tue Dec 20, 2005 10:33 pm

Rich,

1. Have your doctors given you any indications on why you are having so many problems?
2. What was your titrated pressure?
3. Why did they take your auto pap away from you and won't let you try it again?
4. Don't they give you any info?
5. What type of nasal surgery are you contemplating? Hopefully the Nasal Turbinate Somnoplasty. From what I've read, it's the least invasive, and only takes about 20-30 minutes in the doctors office on an out-patient basis. Most patients have very minor pain, or none at all. They are cleared to go back to work in 24 hrs. That is the one I hope to have this next spring - but will have to travel to get it done. Rural Arkansas might catch up with modern technology in about 20 years.

Maybe if you give us some more info, we can offer some more suggestions.

Hang in there.

snork1 · Post by **snork1** » Tue Dec 20, 2005 10:46 pm

Do you have nasal issues that restrict breathing through your nose?

In MY experience, if your nose doesn't work, CPAP won't work.

Nose surgery will NOT fix Apnea directly, but it MIGHT get CPAP working for you finally. In my opinion(see disclaimers) IF you have nasal breathing problems, seriously consider the nasal surgery and ONLY the nasal surgery, Then see if CPAP works for you before doing ANY other surgery.

That is based on the advice of the excellent ENT I went to also.

I had "the works" done to my nose. Now CPAP works and at a much lower pressure. My ENT is NOT suggesting I go any further with surgery as a result of CPAP now working.

Linda3032 · Post by **Linda3032** » Wed Dec 21, 2005 12:05 pm

Snork, what kind of nasal surgery did you have or recommend? Somnoplasty? Also, what was your experience with it and the recovery time?

Like I said above, I'm definitely considering getting the Nasal Somnoplasty. I've been stuffed up for 40 years, and on APAP for 2 1/2 years. I know the surgery won't get me off CPAP, but it sure would be nice to breath during the day.

battlin_blazes · Post by **battlin_blazes** » Wed Dec 21, 2005 12:18 pm

ok let me try to explain better, my current pressure setting is 11 it has been changed from 8-9-11 with no results. I have also tried different settings on my own just out of a years worth of desperation. no results. I can't get a real reason as why I can't have the auto other then it is not a long term machine strictly used to determine pressure requirements. the surgery he wants to do is to fix a deviated septum, open turbinates and open up the throat area. he has explained this will not cure the apnea and I will need another study to see where I stand with it. But he feels at this time it will allow me to get relief from the misery I'm in believed to be from exhaustion of not sleeping. I am currently on a remstar pro2 and sleep with it but can't get relief for anything, he thinks the pressure bothers me and awakens me. this is a new dr I have started seeing and what he thinks based on his evalluation what I should try.I walked away from my last dr because I was getting nowhere other then in debt. The current dr says over a year and five sleep studies its time to try something different. hopefully that answers some of the questions? any other ideas?

Guest · Post by **Guest** » Wed Dec 21, 2005 12:57 pm

[quote="battlin_blazes"]ok let me try to explain better, my current pressure setting is 11 it has been changed from 8-9-11 with no results. I have also tried different settings on my own just out of a years worth of desperation. no results. I can't get a real reason as why I can't have the auto other then it is not a long term machine strictly used to determine pressure requirements. the surgery he wants to do is to fix a deviated septum, open turbinates and open up the throat area. he has explained this will not cure the apnea and I will need another study to see where I stand with it. But he feels at this time it will allow me to get relief from the misery I'm in believed to be from exhaustion of not sleeping. I am currently on a remstar pro2 and sleep with it but can't get relief for anything, he thinks the pressure bothers me and awakens me. this is a new dr I have started seeing and what he thinks based on his evalluation what I should try.I walked away from my last dr because I was getting nowhere other then in debt. The current dr says over a year and five sleep studies its time to try something different. hopefully that answers some of the questions? any other ideas?

kev · Post by **kev** » Wed Dec 21, 2005 2:58 pm

RICH,

This is a must read for you, I wanted an apap for my sleep apnea, I wasn't having any of the problems that your having but I wanted a machine that was self adjusting based upon my needs moment to moment.

I also wanted a machine that recorded all the data and that "I" could review
on a daily basis. When I asked about getting one from my sleep Doc,
I was told "we don't use those types of machines here". I went to a "sleep
center" that acts as not only your doctor but your dme as well.

Well, I was going to get an apap one way or the other, And here's how I did it.

I had already received a basic remstar machine from the sleep center.
So At my next appt. I told my doctor that I had a Boat and that I often
spend weekends and slept on the boat. I continued that the boat was
docked 50 miles from my home and that for conveinance sake I needed
a second cpap to keep at the boat so I could leave directly from work
and not have to drive home.

Well out came the script pad and off I went with my script for a "cpap".

The posters here are right that most any online dealer will sell you an apap
with a cpap script. the dealers set up the machine at the prescribed "cpap"
pressure and went I received the machine I set it up in apap mode.
(most online dealers include the health technicians book with your order)

I did have to pay out of pocket for the machine but I found a puritan bennett 420E online for "UNDER $500". The out of pocket expense
was well worth it because I can now take charge and monitor my sleep
progress daily.

I haven't gone back to "the sleep center" and I'm currently looking for
a sleep doc that can tolerate a patient that will not settle for "we don't use those here".

My health , My money, My choice !!!!!!!!!!!!!!!

I hope this helps : KEV

battlin_blazes · Post by **battlin_blazes** » Wed Dec 21, 2005 4:41 pm

thanks everybody for the help I do appreciate it my main reason for wanting the apap back I want to know 110% this is a sleep problem. Like I said I felt good for 3 days and they took it away soooooo.... was it a fluke or the machine? I see what your all saying and what I may do is request my rx and tell them I need a second machine for the fire station wink wink. I currently have the dr.s machine also but need to get my life back. I've told them I'm very uncomfortable driving etc. but they just don't care . so thanks again we'll give it a try and see what happens. I'd hate to get cut up not being 110% sure I'm getting cut on for the right reasons.

surgery whos had it and results

surgery whos had it and results

surgery

the nose knows