Considering "the works" surgery and would love advice

Here's a link that should help you considering you seem to fit the picture - it's VERY worthwhile, and will save you a lot of trouble.

viewtopic.php?f=1&t=70205&p=656899#p656899

chunkyfrog wrote: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!

Yep me too. I actually prefer sleeping on my side but gave up further "preventing supine sleeping" experiments when I quickly realized it made zero difference in my pressure needs or my events since I am worse in REM sleep and can't do much about preventing REM.

If my AHI was 3 on my side....I would be first in line for that buckwheat body pillow and be using it in a heart beat. I have a bad back and pelvis (old injuries) and even the small buckwheat pillow I used was awesome relief. Gentle yet firm support. I have been toying with the idea of getting one just because of the comfort. I may just have to do more than toy with the idea. My back isn't getting any better and I am not getting any younger which sure doesn't help the old arthritis.

Yeah...positional apnea would be like winning the lottery!

I hate to say this, but throat and nasal surgery is how ENT's make a good living. The gold standard for effective OSA treatment is CPAP, not surgery. The other gold standards is weight loss, if you are overweight. If you look at sleep apnea from an evidence based medicine perspective, those are the two primary things that actually work. 1) properly titrated CPAP/APAP/BiPap and if needed, usually is, 2) weight loss. Also avoidance of any kind of sedative medication or alcohol.

The surgeries dont have that great a reputation for treating OSA if you look at them from a purely evidence based medicine perspective. Perhaps if you have some truly abnormal and maybe unusual anatomy it might work well. I dont know. All I know is the only kind of surgery I think I would consider for myself would be bariatric surgery for obesity.

Im just saying, keep in mind the source of the three recommendations...ENT doctors. If you go to someone who is a pure sleep specialist, you would probably get a different recommendation.

CPAP is not that bad. I actually like mine. There are nasal pillows available that dont make marks on the face and the modern machines are less harsh than the older machines.

I agree with the others - go for the tonsillectomy and deviated septum surgery, but hold off on the others for all the reasons stated.

I have a very respected neurologist who specialises in sleep disorders and when I first saw her, she said "I'm obliged to tell you about the surgical procedures available for OSA if you hope to avoid using XPAP, however I would advise against them as they are very rarely succesful and there's a high probability you'll need XPAP anyway".

Cheers, and good luck with whatever you decide to go ahead with - please keep us up to date with how you're doing.

xenablue

Not knowing more about your condition, I would be extremely hesitant to have surgery, at least some of them. There is no such thing as 'minor' surgery and I know at least one person who died during elective nasal/sinus surgery. A lot depends on your surgeon's skill, a lot depends on the hospital and anesthesiologist (which is now usually a nurse anesthetist), a lot depends on your body, and a lot depends on luck. That's a lots of 'lots'.

Remember that surgical techniques tend to get better over time, not worse, so you really don't need to worry about 'the rest of your life on CPAP' -- if it ever becomes unbearable, you can always have whatever technique is in vogue at the time, but the converse is not true -- once your soft palate is maimed by surgery, you can't get it back and from everything I have read that UVP procedure is very painful and out of fashion. They've replaced it with 'laser' I guess, but the end result is about the same -- still need CPAP and still had to suffer.

Your experience reminds me of when I was a physician in residency and was told I was a 'perfect' candidate for refractive eye surgery, which at the time was radial keratotomy, a way to slice the cornea and weaken it to improve distant vision. Well, I don't need to tell the intelligent reader here but that surgery is long out of fashion and has been replaced by a better method using an laser), but the people that had that surgery have to live with it for the rest of their lives --- it weakens the cornea to the point where the person's vision fluctuates to the day PLUS they are at twice the risk of serious eye globe rupture if they are hit with any blunt force (say a fist or a soft ball).

I agree with the poster who said: ENT make their living from surgeries. Other physicians will "run, not walk" away from surgical procedures. But as I said in the beginning, it depends exactly what is wrong -- if your nose is completely blocked off, perhaps there is something that could be done. Just make sure it isn't something fixable like nasal allergies etc.

Well, take it from someone who has had the surgery. I was talked into the UUP? surgery along with fixing a deviated septum. The deviated septum was the second surgery for that. Painful, yes, like zowee!!! It was weeks before things even began to feel ok. Did it help, well still on CPAP and while I could loose some weight, its not that what is causing the trouble. Its just age and throat architecture. I exercise and do everything right but the surgery was not the answer and it was not work the bucks or the pain. CPAP is. I went from 123 episodes an hour to an AHI of about 1 with CPAP. I have not heard someone who had the surgery say it was that successful. What I suggest is listening to people on this forum, exercise, watching your weight and paying attention to the data from the CPAP machine. IF you have an auto, begin learning to tweak things and get a Dr. that will work with you. I used to fall asleep at stop signs, but with proper use of the Auto, I now lead a normal existence. Good luck, and hope you can do as well

Jen,

In 2004, I, too, had the works: I had my septum repaired and a UPP.

My scores were marginal - I could never get any sleep during the sleep studies - but the surgeon recommended the procedure (and I didn't want to be tied to a CPAP) so I consented. Big mistake.

I'd recommend getting your septum fixed. I had no idea how restricted my breathing was. It really opened me up.

As far as the UPPP - I wouldn't recommend it. The procedure made no difference in my quality of sleep; I still snore like a bear; it messed up my sense of taste; sometimes weird things happen with food particles lodging in the very back of my throat; and it hurt like heck - especially on the fifth and sixth days (of course I am a man.....)

I finally broke down this past September and got an APAP and am kicking myself for not doing this years ago. Yes, it's kind of a pain to be tied to but the benefits have been incredible. I'm averaging 4 - 5 on my AHI and am feeling rested for the first time in YEARS.

Go for the CPAP (APAP) before you succumb to the knife.

Good luck!

I would enter UPPP in above search box and read lots of posts on it. You need to find those who actually underwent these procedures and not just read stories about it from others. Also, check Dr. Steven Park's posts here on this board, and here: http://doctorstevenpark.com/

Jen516 wrote:....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 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. Jen

Jen...first of all....welcome aboard. Glad you decided to start posting. I pulled several of your quotes to show you how you feel. You are terrified of the surgery (rightly so)...you've been on CPAP for 2 years and tolerate it very well....and you really don't mind it. There you go! I vote for not doing the surgery. First of all...you can't undo it if you don't like it. You'll be stuck with it (for the long term!). Secondly...I believe you will continue to get along with your CPAP as time goes on. I've been on the hose for 3 years this month....and honestly...hosing up is a non-event. I just don't think about it being different anymore. I just got braces on my teeth (for the second time) and they are giving me way more trouble than my CPAP machine! Listen...give it some time.....maybe in a few more years...revisit the concept of surgeries. Maybe procedures will have improved by then.

T.

Hi,
Please let me send you a reply from a person who had all the surgery(UPPP), where everything was removed and it was the worst thing that has ever happened to me. After 15 long months of trying to use c-pap with no results my Dr. told me that I had failed c-pap and wanted me to me to have the surgery.
I had a long painful recovery and my sleep apnea is much worst now than it was then so I continue to try to use c-pap for the past 6 years as best I can but it is much harder because there is nothing left in the back of my throat to stop the force of air from the c-pap from coming back out my mouth.
I thank GOD every day that I am still alive,That's how bad the surgery was,but then. I,m allergic to pain meds so the recovery was really bad for me.I could only take liquid tylenol.

I pray that you will consider all this before you agree to surgery.I went in blind, knowing nothing,trusting my Dr. to know what was right and I have to live this way fro the rest of my life.
God BLESS YOU!

Wow, again, thank you all for your eye-opening feedback. Sister, your post was very helpful.

I think I have decided, after reading all of this, that I am going to try side sleeping through a number of methods. I also am going to just get my septum fixed to see if that helps my everyday breathing and helps me breathe through my nose at night (without CPAP... hopefully the side sleeping will work). I feel that fixing the septum is not too radical of a surgery and should benefit me both day and night. I will hold off on the UPPP but will discuss with my ENT about the tonsils only.

Again, thank you all so much. I will continue to post!! Jen

Hey first post here

I had surgery 5 weeks ago, pretty extensive, tonsils, throat and back of tounge and front of throat pulled forward by 5 excavations which colapse and pull things forward. Definitley opened throat right up.

Yea as previous post mentioned was truely horrific to go through (2 days in intensive care 2 in normal hospital) That said after about 14 days was almost back to normal and now Im almost forgetting the pain I went through. Mainly painful once returning home from hospital as being on less pain meds. Dont listen to hospital - they sent me home on tremadol and panadene forte. I went to my GP who straight away put me on oxycontin (slow release morphine) Once I had proper pain meds the home recover was pain free.

It got rid of my apnea and severe snoring allthough i now snore a little through my nose from a different location - is a soft purr. Is nothing like before allthough still wakes my partner. The surgeon says if I lose another 5 kilo will eliminate that also. Not sure If i believe him but will give a go. In mean time tempted to purchase a cpap or apap purely to keep partner happy and well rested.

If you are considering surgery all I can say is nothing will prepare you for the first 2 days in hospital - its very scary not being able to swallow and breathing is difficult due to swelling. If i had to do it a second time I would as i know now I can get through and will be all back to like it never happened in about 2 to 3 weeks. First time laying in ICU with throat cut out is very traumatic but not as bad as it seems once you know they will look after you, keep you breathing and keep you adequatley full of morphine as to feel pretty much no pain at all.

Just my experience and sure is not so easy for others, have heard of side effects and guess i was just lucky - is all ok for me in that respect.

Cheers, Jeff

ps

my surgery did have complications (severe swelling restricting breathing) although they addressed very quickly (filled me with steroids) and never got to stage of me panicking. They also had to keep me in ICU for 2 days and if swelling didn't subside or became unresponsive to steroids they said would have to put me back into surgery. So for me was more trauma and was extenuating circumstances wich most wouldn't experience.

There was little to no pain entire time in hospital due to amount of morphine.

Is all perfectly healed now and no problems like some i have read - fluid through nose when drinking etc (that happened only once in hospital)

I would recommend it all in all If you could guarantee the outcome I had - I also had an extremely good consultant surgeon who carried out procedures.

I think the conservative route (positional therapy) is a fine way to go, but I'd think about whether you want to go under anesthesia for one procedure and skip the other. I can't make the decision for you, Jen, but if it were me and my tonsils were as "enormous" as you're describing, I wouldn't go through anesthesia for the septoplasty only to have to do it again at a later date for the tonsils... But that's just me, based on my experience. I had a good surgeon, though. You would not likely spend 2 nights in a hospital. Because of my apnea diagnosis, they did keep me over one night. I have to say, with all the horror stories floating around, I'm surprised anyone does this procedure. I had it in my 40's and lived to tell about it (and apparently to post about it). I know people talk about how horrific it was, but it just wasn't for me. There was no moment in time where I thought for a second, "I can't tolerate this". Now compare that to childbirth.