Looking for thoughts on surgery

Hi there.....

I've been on CPAP for a couple years.... had a pretty hard time getting the right mask fit, and this site really helped me out. I was about ready to give up but a few suggestions from here kept me going. Now I'm looking for some input on some surgery that's an option for me.... hoping to hear real-life stories in addition to what the doctor has told me.

The background:

I met with an ear-nose-throat specialist last August, he looked me over and said I was a good candidate for cartilage surgery to correct my deviated septum, and I also could benefit from having my tonsils removed, uvula trimmed, and other throat tissues trimmed as well. He said all this surgery would likely NOT eliminate my sleep apnea, but would hopefully lower my needed CPAP pressure (I'm at 18 now) and maybe eliminate my need for a full-face mask. He also said that, while both surgeries should benefit me, the throat surgery will be much more traumatic with a longer recovery time. He said he could do both at once, but proposed that I get just the septum done first, then once I'm recovered decide if I want the throat done.

Well, almost a year later and I still haven't gone forward with anything. I definitely want to do at least some of it, but have been waiting for what seems like a good time to miss some work, and that hasn't happened. Now I've realized that will probably NEVER happen, so I am trying to nail down what I want to do.

The decision:

So, as I said, he proposes to do the septum first, with a recovery time of a week. Then, if I'm not happy with the improvement, do the throat with a recovery time of two weeks. My thoughts on this... First, while I know I have a deviated septum, I think it's the secondary cause of my apnea, the primary being a narrow airway in my throat due to large tonsils and an overbite. Second, I really think that if I have the septum done, almost no matter what I'm going to want the throat done after. I mean, if the septum is done and it's no help, obviously I'll want to do the throat. But if the septum helps, I imagine I'll be thinking, "This could get even better if I have the throat done." So why not do both at once, and miss less work?

So I'm hoping to hear from some people who've had either (or both) of these surgeries, as to how they went, how the recovery was, and what the benefit was afterward.

Thanks!
Yeller

I would definitely not have any surgery at all done to the soft palate.

But that's just me, and I'm not a doctor.

LINKS to surgery, turbinates, Pillar, TAP experiences
viewtopic.php?t=2836

Getting your septum corrected would help with breathing better through your nose, but as you already know won't help with apnea. However, it will probably make using cpap more comfortable.

As far as the throat goes if you have abnormally large tonsils then having them removed might help you reduce your pressure some. However, I would not under any circumstances let a doctor touch my uvula. Nope nada not at all.

I was prescribed cpap last October. I hated it. I refused to use it, packed it up and put it in the closet. Surgery was scheduled. (same surgery you are talking about) My ENT said I was a great candidate for this. I posted on facebook about my up coming surgery and suddenly friends started crawling out of the wood work begging me not to do it and to research it more. That is when I found this forum and others.

Here is what I learned.
You have a uvula and the tissue around it for a reason.
After having it "trimmed down" (removed) you can expect possible side effects of...
Choking because food doesn't go down as smoothly.
Food going up and then out your nose when you swallow.
Food going up your nose and getting stuck in you sinuses (feeling it in there but not being able to do a thing to get it out until it gets infected and you go the ENT and he removes it for you)
Soft tissue being replaced with firmer scar tissue leaving you with the permanent sensation of something being stuck in your throat.
Being back on CPAP within 5 years most likely needing BiPAP because your pressure needs have increased. (sadly I have heard this happens more times then not).

There are other possible side side effects but these were the most common ones I read about. In addition to this list there is also a list of possible complications that can be pretty serious.

The clincher is the after my ENT went on about how good this surgery would be for me and then got upset with me for not letting him do it I found a sleep doctor. After a thorough examination he told me that he would in no way recommend I have the surgery because I was not a good candidate and it would not help me at all.

I wish I could find the link for the study I read but while I was researching I read a study where people with mild to severe sleep apnea all had turbinate resection, tonsils and adnoids out, UPPP and hyoid myotomy. Every one of them had a post op sleep study done apx one year later. The result showed the almost every one of them saw no benefit at all from surgery and 75% had a higher AHI and needed more pressure then before surgery. Only one person in the whole study had improved enough to stop using cpap and he had very mild apnea and low pressure setting to begin with. It left me wondering why any doctor in his right mind would still be doing these surgeries.

I did go ahead with the turbinate resection (I don't have a deviated septum so did not need that). I'm very glad I had it done because for the first time EVER, I can actually breathe through the right side of my nose.

I'm sorry for the length of this but it pretty much sums up everything I learned while doing hours and hours of research on these surgeries.

Don't apologize, THANK YOU for the length of your post. That's the kind of info I'm looking for!

ps: Something I forgot to mention was that although my ENT did not tell me of ANY possible negative side effects the one thing he did tell me was to expect the recovery to be very bad. It takes several weeks to get back to normal eating and he said most of his patients lose 15 pounds post op simply because they can not eat solid food for a while.

Like I said above if you have larger than normal tonsils you might consider getting them out in hopes you could reduce your pressure but I've heard for an adult the recovery from that is awful as well. I guess it depends on how much your pressure is bothering you and if you want your pressure lowered badly enough to endure a couple weeks of post op tonsillectomy torture.

My apnea is also primarily because of my small lower jaw and large tongue. My sleep doctor has said that I would be a good candidate for surgery, but she recommended I try CPAP first, which is what I am doing. I had a septoplasty and turbinectomy back in 1999, and it did help me for some time, but my turbinates have grown back since then. That's an easy surgery to recover from, btw. My sleep doctor doesn't recommend UPPP, nor does anyone else I know. It has a very low success rate nowadays (25% is the number I seem to have heard).

For overbite, the most famous surgery is still the MMA. I don't think I would consider it. I personally think an easier first option is a dental appliance that holds the lower jaw in place and fixes the overbite. I believe there are devices where you turn the screws once a week to pull out the lower jaw. My device from 1999 simply held my lower jaw forward, no adjustments, but it doesn't fit me that well any more and I now need to get a dentist who can make me one. The advantage of this device is that it reduces the throat airway collapsing *and* keeps my mouth closed, which makes it easier to tolerate a nasal mask/pillow without needing a full-face mask.

So if you don't do the surgery route, and want a non-surgical option for the lower jaw, look at a dental device. Some folks get braces to correct their overbite, and it that helps kill two birds with one stone, it may prove to be a good option for anyone whose apnea is caused by a small lower jaw.

Good timing!!! I am scheduled for nose surgery this coming week to correct deviated septum and remove some nasal polyps. My ENT has advised me that I cannot use CPAP for 5-7 days. I plan to sleep upright in a recliner during that period. I have no plans for any type of throat surgery.

LSAT wrote:Good timing!!! I am scheduled for nose surgery this coming week to correct deviated septum and remove some nasal polyps. My ENT has advised me that I cannot use CPAP for 5-7 days. I plan to sleep upright in a recliner during that period. I have no plans for any type of throat surgery.

The best post op advice I can offer is to keep plenty of saline spray on hand and make good use of it. I only had the turbinate resection done and was only off cpap for one night. I did sleep in bed that night but I was stack up on about 5 pillows. I was thankful to get the cpap back because I cranked the humidity as high as it would go and it felt wonderful on my sore sinuses. Since you won't be able to do that right away lots of moisture from saline spray will definitely help.

oldyeller wrote:could benefit from having my tonsils removed, uvula trimmed, and other throat tissues trimmed as well.

Could you be more specific about which exact surgery he proposed to do? How big are your tonsils (do you know the #)?

I don't have much confidence that surgeons' predictions for improvement are reliable from one surgeon to another. For example, one surgeon said that if I have surgery, I can expect possibly a little improvement in my apnea and symptoms but nothing major and virtually no change in my pressure needs. What I would likely get out of it is to be able to tolerate CPAP better. Another surgeon, in discussing the exact same surgery, said that while there are no guarantees, I could very well have big improvements, and if I still need CPAP, it may half my pressure needs, and would help my tolerance to CPAP. So all they've agreed on is that I would tolerate CPAP better.

My biggest problem is my deviated septum and valve collapse. My tonsils are larger than expected for my age but not so large that there's a lot of hope that the tonsils will make a big difference in and of themselves. However, the thinking is that because I am going to be under general anesthesia anyway, and taking out my tonsils could help, I may want to do it at the same time.

Personally, I am not inclined to do any trimming of any of my throat tissues and uvula, although if I was told I needed it, I would thoroughly investigate the surgery and the surgeon before I would sign on the dotted line for that. However, I am inclined to have my tonsillectomy sutured in a manner that has been found to help in sleep apnea (has to do with the way it tightens up as it heals). This is not the same as a UPPP or some other soft palate surgery, as it's just suturing for a tonsillectomy.

I am not happy about the thought of having significant pain due to the tonsillectomy at the same time that I can't breathe through my nose. That said, I'll probably do it at the same time because I don't want to go under anesthesia twice, and if I didn't do the tonsils, I would always wonder if it would have helped over and beyond whatever benefit I get from the nose.

Sleepingugly, it sounds like we're in very similar situations..... right now I can't be more specific about the exact surgery and size of my tonsils, as I said my ENT consult was almost a year ago and I don't remember the exact details much better than what I've already described. I do remember that he said my tonsils were enlarged but not huge, and that he seemed to think the other trimming was the part that would be more beneficial for me. Having read some thoughts of others, I'm inclined now to ask about just having the tonsils with no other trimming.

Like you, I really want to go through one surgery, both for the anesthesia reason and having to go through two separate recoveries.

Maybe you should get another opinion about surgery, and ask specific questions about the throat portion of the surgery?

SleepingUgly wrote:Maybe you should get another opinion about surgery, and ask specific questions about the throat portion of the surgery?

I agree with getting a second opinion. Perhaps from a sleep doctor instead of an ENT. I think ENT's put too much stock in the success of these surgeries and never really do follow-up sleep studies for find out what is really going one. In fact my ENT admitted to me when I asked about his success rate that he had NEVER done a follow-up sleep study and only went on what his patients reported. That made me very uncomfortable.

Then as I stated above I sought a second opinion from a sleep doctor and was told that I should not do it because my tonsils are normal sized and that in looking in my throat he could see no reason that I would benefit at all from the surgery.

oscar98 wrote:

SleepingUgly wrote:Maybe you should get another opinion about surgery, and ask specific questions about the throat portion of the surgery?

I agree with getting a second opinion. Perhaps from a sleep doctor instead of an ENT. I think ENT's put too much stock in the success of these surgeries and never really do follow-up sleep studies for find out what is really going one. In fact my ENT admitted to me when I asked about his success rate that he had NEVER done a follow-up sleep study and only went on what his patients reported. That made me very uncomfortable.

Then as I stated above I sought a second opinion from a sleep doctor and was told that I should not do it because my tonsils are normal sized and that in looking in my throat he could see no reason that I would benefit at all from the surgery.

I'm not sure why a sleep doc would be in a good position to give an opinion about surgery for any given individual, unless they are also an ENT (but then again, even the surgeon's can't predict very well who will benefit from surgery or not).

One more thing... Most surgeons that remove tonsils do so for reasons other than sleep apnea, such as recurrent tonsillitis. The surgeon should be familiar with apnea and makes the incisions so that when they heal, they don't contract in a way that makes the airway smaller.

oscar98 wrote: Here is what I learned.
You have a uvula and the tissue around it for a reason.
After having it "trimmed down" (removed) you can expect possible side effects of...
Choking because food doesn't go down as smoothly.
Food going up and then out your nose when you swallow.
Food going up your nose and getting stuck in you sinuses (feeling it in there but not being able to do a thing to get it out until it gets infected and you go the ENT and he removes it for you)
Soft tissue being replaced with firmer scar tissue leaving you with the permanent sensation of something being stuck in your throat.)

I've had my tonsiles and uvua removed. I did not experience all the side effects listed above. About a day or two after the surgery liquids would sometimes go into my nose when swallowing. The ENT said this was normal just after surgery and soon it did not happen again. Unfortunately for me the surgery did not cure the apnea because I did not address what utimately was my root cause -- tongue position. see more information at following link.

viewtopic/t52246/My-Solution-for-Apnea- ... tion.html