Considering "the works" surgery and would love advice

Hello, I'm new to posting to these boards though I have been lurking for awhile. I would love your collective advice!

I am a 35-year old woman with moderate obstructive sleep apnea that was discovered 2 years ago when I was pregnant. At the time, it was severe (a score of 92). Since pregnancy, I have been re-tested with a new score of 24. Interestingly, when on my side my score is a 3. When on my back, more like 30-something. I have ENORMOUS tonsils that take up the whole back of my throat and have such a bad deviation in my septum that I have never been able to breathe well through my nose. I am not overweight and I am in good physical shape.

I have been to THREE well-known ENTs in my area, all recommended by friends who are doctors. ALL THREE GAVE THE SAME RECOMMENDATION: Tonsillectomy, fix my deviated septum, adnoidectomy (possibly), shave palate and uvula. So basically the works.

I have three young children (1, 5, and 7) and take care of them full-time. I was told the procedure is very painful and recovery is a full 2-3 weeks. I was also told I will need someone to care for me as well as my children, so two people for 2 weeks or so.

I am TERRIFIED of this surgery, the recovery, and the pain. However, I am 35 years old and can't imagine going to sleep with a machine for the rest of my life. I also had three children and have a pretty good tolerance for pain. I do have to say, though, that I have been on my CPAP for 2 years now and tolerate it very well. I don't really mind it (in the short-term, at least). With my CPAP my apnea is cured.

I do know that this surgery is not 100% in curing my apnea, though all of the doctors think it is likely and will definitely improve my overall breathing.

I just don't know what to do. I already cancelled surgery once out of fear and I need to make a decision yet again. In July, I can have help (my mom, MIL, etc), so it makes sense to have it done then. I need to get going with my physical and hospital papers, etc.

Please, can someone please give me your advice? Would you do the surgery now? Would you wait until my children are older? Would you try other options (like the Zzoma, which my ENT thought could be a good option for me... but again, do i want to go to bed wearing a big pillow every night?) Do I just suck it up and do the surgery?

Thank you all in advance for your thoughts. I so appreciate it! Jen

I don't have a problem with the deviated septum and tonsils, but the rest worry me. Shave palate and uvula are far more serious and a few on this board have had it done and still require CPAP therapy. Why not do the first part and see what it does for your breathing and put off the rest for later (if necessary).

Jen516 wrote:shave palate and uvula

This part I would totally avoid. Do a search for UPPP I think it is...that procedure is the most painful and doesn't guarantee the reduction in events and at your age...probably won't last as most who have reported having it say they end up back on the machine in 5 years anyway.

The other procedures I would sure consider.

Since your sleep apnea is really markedly reduce with side sleeping...people do learn to sleep on their side if they work hard at it and can sleep in one position all night without pain.
Those pillows attached to the back sure don't look very comfortable but hey we do what we have to do sometimes if we want to badly enough.

I will share with you what I did when I was experimenting trying to stay on my side to see if it made any difference with my therapy. The tennis ball trick didn't appeal to me at all. The whole idea is to sleep all night....not wake up in pain from the tennis balls so I tried various homemade stuff. Regular bed pillow behind my back..failed because it slid out from behind me. Same thing with rolled up bed linens.
Wedge pillow...same thing. I needed something with some weight so it wouldn't move.
I ended up with a buckwheat pillow (used for under my head) and put it against my back and found it quite comfortable and it didn't slide out from under me and it kept me on my side just fine.
It has enough weight that it isn't easily moved. Now I am a small woman and a larger person might need a larger buckwheat pillow (mine is small) but they make them in king size and even make body pillows out of buckwheat.
This place has the best price that I have found for the larger buckwheat pillows and they offer a body pillow. http://www.beans72.com/Pillows.htm

Sobakowa makes one but it is smaller.. less expensive and might be worth using as an experiment to see if you like the idea. Ebay is a good source for those. They also make a "Cloud" pillow with micro beads. It is comfortable but it doesn't have the weight to keep it from sliding out from under you and I don't think it will do a good job preventing sleeping on your back. I have one that I bought to try for my arthritic neck. I still prefer the buckwheat though.

Just an idea you can try while deciding whether you want the surgery or not.

My brother-in-law had UPPP 12 years ago. He was adamant about not going on CPAP (claimed claustrophobic with mask). The surgery was terribly painful afterwards He had to learn to swallow differently. Every time he ate or drank something it came out his nose instead of down the hatch. It was a long 6-month recovery (forget 2-3 weeks). The saddest part is that he still has severe snoring and OSA. He refused a follow-up sleep study because he knew the surgery hadn't cured a thing. The success rate of UPPP is low and most people still need CPAP. Because OSA isn't just the bulkiness of the structures around the throat. It's the strength of the muscles in the trachea to keep the airway open. My brother-in-law is a great example. He got half his throat removed and he still can't breathe at night.

I looked into surgery as a possible fix since I still have my tonsils at 54. I decided the risk of surgery was too great and most often does not help with sleep Apnea. I'm sure your doctors would love to do the surgery because they make money doing it and don't have to guarantee it will stop the sleep apnea.

A CPAP machine isn't going to kill me and my sleep doc said I would benefit greatly from a little weight loss as well. Maybe this is an option for you? Surgery wouldn't be my first choice over CPAP unless I needed it to cure an eminent life threatening condition.

I would not think of CPAP as being for the "rest of my life". New research is being done all the time in the field. Since your sleep apnea is primarily on your back it makes much more sense to me to learn to sleep on your side. You could also see a dental specialist who specializes in surgery on the maxilla and mandible and explore the possibility of mandibular maxillary advancement. The UPPP surgery makes no sense to me since in all likelihood you will still need CPAP. Please, learn to sleep on your side by whatever means and put off this surgery for a while. I'm told the MMAdvancement surgery is quite effective, but please do your own research. I have heard from a few people cured from surgery, maybe we do not hear from more because if they are cured they don't write back. Please, please do as much research as you can before doing this surgery. Go to all the forums, use google and every search engine and research. Ultimately it's your choice. When your Mom can be there would be best. It cannot be reversed. In England they are researching an external variation on the electrical stimulation device, try Provent. We usually think of surgery as a last resort.
You're tolerating CPAP. Is something else going on that would cause you to consider such radical surgery.
Good luck, keep us posted on your decision. I don't mean to be negative, but with an AHI of 3 on your side I find it hard to understand why you would even consider this.

jen516,
My sleep numbers are similar to yours. A possibility, not a recommendation, is to sleep on your side (see Pugsy's instructions) and get a dental oral appliance. See my current posting at viewtopic/t77366/Is-Oral-Dental-Applian ... ering.html

Pugsy, thanks for your instructions, I'll save them.
Ed

Three of the suggestions sound like things I would do--if I were in your shoes:
1: Tonsils--you don't need them; they are in the way of effective breathing.
2: Deviated septum--not fun at all--needs fixing.
3: Sleep on your side--whatever tricks you need to use to get there, do it.
The other surgeries are extreme and irreversible--you are too young for such things--(get a tattoo instead.)
If you can't stay on your side, then you will have to use the machine--it's not really as bad as some say;
and one of these days--in your lifetime--there will be something else better, prettier, less trouble.

LSAT wrote:I don't have a problem with the deviated septum and tonsils, but the rest worry me. Shave palate and uvula are far more serious and a few on this board have had it done and still require CPAP therapy. Why not do the first part and see what it does for your breathing and put off the rest for later (if necessary).

I agree whole-heartedly - just do the first two procedures. My ex had the shave palate and uvula and it did NOTHING to fix his OSA.

Do you tolerate CPAP well despite your nasal issues? If so, consider the conservative route below. If not, consider at least a septoplasty:

The conservative route:

• Are you without any symptoms if you sleep entirely on your side? If so, follow the suggestions for keeping yourself off your back.
• Consider alternatives to CPAP, such as Provent, either alone or in conjunction with positional therapy if positional therapy alone is not enough.
• Wait and decide later.

The less conservative route that I would consider:

• If your tonsils really are enormous and practically touching, get a tonsillectomy with pharyngoplasty by a surgeon who does these procedures for sleep apnea, not just an ENT who removes tonsils for tonsillitis reasons. See this link for an explanation of what pharyngoplasty is: http://www.sleepapneasurgery.com/pharyngoplasty.html
• Do the septoplasty. Talk to a surgeon about whether it can be done without packing or splints.
• Do not let them touch your uvula or palate.

I had a tonsillectomy with pharyngoplasty, septoplasty, and turbinate reduction a couple of years ago. I didn't have tonsils as large as yours, although it turned out there was more to them than initially thought. I had them removed because I was going under for the septoplasty anyway, and figured that barring any complications, I might as well optimize my chances by removing them. There was no splinting or packing of my nose and I don't remember the nose being an issue at all. A tonsillectomy in adulthood isn't a cake walk, but I didn't find it to be as horrific as all the descriptions on the internet. You'll be on pain medication, at night for a longer time than in day, so it would be good to have help.

My dad had the palate/uvula thing done. His "doctor" told him that his apnea was too severe for CPAP. Say what? Are you kidding me?? And you're a "well-known" sleep doctor?!

Anyway. The recovery was long and painful. Oh, he also had his tongue anchored, an extra procedure. Nothing worked. He still snores like a bear, and as a side effect from the surgery gets choked very easily while eating. His "doctor" did not do a follow up sleep study to see if he was really "cured" of his apnea.

When I go to visit him and stay over night, I can hear him snoring/gacking/gasping all night long in the next room and I'm hard of hearing and don't wear my hearing aids to bed!

He won't listen to anything I tell him and won't even let me put a pulse oximeter on his finger for one night to PROVE he still has problems. The "doctor" told him he was cured and he's sticking with that.

I would have the tonsil/deviated septum surgery . Don't do the other two.

Lisa

Wow these responses are so great thank you all so much for this feedback.

I just put a call into my doctor to get further explanation on the UP3 part of the surgery. He never said he was doing a UP3 but said he would "shave it down" when doing the tonsillectomy. I'm not sure if that is the pharyngoplasty you mention. But I am going to find out.

I did mention to him to do just the septum and skip the tonsils for now, but he told me the recovery would be about a week for the septum and thought I would have a much better shot curing my apnea by removing the tonsils as well. He didn't want to do more than one surgery. However, I didn't ask him about doing the tonsils/septum now and holding off on the rest for later.

Pugsy, I will try the pillow idea. Thank you!

Heavylids, I really don't have much weight to lose. I am 5'5" and weigh 135. I guess I could stand to lose 5 lbs or so but nothing that I think will really change my apnea. It's more my anatomy that's the problem... small jaw (according to my ENT), huge tonsils, and blocked septum

Mary Z -- thank you for your comments. I appreciate it. It makes me think. I am always wondering what new advances and options will be out there in the future, which is why I am struggling to do this now. I guess the reason I want to do this now is my desire to get it done. I am the type of person who likes to get it done as soon as I can and get it off my plate. I have always been that way. I think I just want to "fix this problem" though I know this may not be the fix. This is why I am struggling!

Ed, Chunkyfrog, sleepingugly, and jen -- you all seem to feel the same way and I agree. If I just do the tonsils and septum will the recovery be as bad? Will I really be out of commission for 2-3 weeks? Would you try side-sleeping and postpone for another year to see how that works? (Probably couldn't do the surgery again until next summer when everyone is off for the summer again).

Again, thanks to all. Going to read more into what you suggested!

Jen516 wrote:Ed, Chunkyfrog, sleepingugly, and jen -- you all seem to feel the same way and I agree. If I just do the tonsils and septum will the recovery be as bad? Will I really be out of commission for 2-3 weeks? Would you try side-sleeping and postpone for another year to see how that works? (Probably couldn't do the surgery again until next summer when everyone is off for the summer again).

I would try side-sleeping only if my sleep study indicated that I had only positional apnea, and if my deviated septum and large tonsils were not an issue in my life otherwise. If any of this didn't hold, as it didn't for me, I chose to do the nose and tonsils. I would never do the rest of it, as I've heard nothing good about those procedures, and lots of risks of complication.

Pharyngoplasty is a way of suturing the tonsillectomy so that when it heals, it scars and contracts in a way that maximizes the airway. But the term "pharyngoplasty" appears to be used in lots of different ways so I would not assume that the way I'm using it and it's used on the link I posted is the same way the surgeon that's going to operate on you is using it. And only some people have been trained in how to do that. Even if you can't get the pharygoplasty done, a tonsillectomy on someone with "enormous" tonsils can be worthwhile.

I don't think you're going to be completely out of commission for 3 weeks, but for the first couple weeks, you will still be taking pain medication at night (maybe week 3, I'm not sure anymore). I posted something on this site about the recovery from tonsillectomy:

viewtopic.php?f=1&t=53426&st=0&sk=t&sd= ... eepingugly

I couldn't have been that bad off if it was posting the next day! But you don't want to be the one to have to get up with kids, and you can't drive them initially. It would be good to have help.

Jen516 wrote: Ed, Chunkyfrog, sleepingugly, and jen -- you all seem to feel the same way and I agree. If I just do the tonsils and septum will the recovery be as bad? Would you try side-sleeping and postpone for another year to see how that works?

YES - definitely try alternatives to surgery. IMHO! lol

Jen said her apnea on her side is a 3.
The most events are on her back.
I wish mine were positional. I could SO sleep on my side!