Do surgeries to treat mild/mod apnea work? Results/stories?

[CAsleep]

Hi all.

I am a normal weight female, 28 years old, who does have chronic fatigue, so that's why I had the sleep study to begin with. I did used to snore, even as a child. I actually do think I have some kind of genetic disposition to snoring and maybe thus a genetic structural issue? My Dad is normal weight/thin and snores a lot! Though I've never had problem breathing through nose while awake.

Well, had a sleep study, and it showed borderline mild/moderate apnea. I am using a great APAP machine, thanks to this forum. I check my data and my apneas are at pretty much 0. It HAS helped my level of functioning, somewhat, so I think it's part of the solution to my health issues. The horrendous dark under eye circles I tend to get are GREATLY improved by the APAP, and when I don't wear it (due to falling asleep too quickly), I feel and look terrible the next day. Though, this hasn't completely cured my chronic fatigue illness.

Anyways, I am committed to using the machine for life if necessary, because my health comes first, but WOW it's a scary thought. It already greatly hinders my lifestyle/marriage/overall happiness, and am nervous about what it'll be like with babies/children, because it already makes sleep more difficult for me (though apparently more restorative).

ANYWAYS....for a few reasons, I am toying with the idea of surgery. I feel like I should give my reasons, because I want to address the questions, "if I can handle my machine/mask, why can't you?" And, "What makes the risk that it might not even work, worth going through a big surgery?"

Here are my reasons:

-Hubby and I would like to start our family soon, and we are hoping for more than one child. So there is the obvious problem of multiple awakenings once the baby is born for feedings (not to mention more babies after the first), AND my machine causes me to take about 45 min or more to fall asleep, which will be a little ridiculous when sleep will be a luxury (it's ridiculous now!).

-I know this sounds far fetched, but I am worried about the effects of the plastics in the tubing to the developing baby while pregnant, because I can smell the plasticy smell (anyone have advice on this?) (please no arguing on whether this is a valid concern, it is just a thought)

-Like I mentioned, it takes me awhile to fall asleep with mask/tubing, because I fight for comfortable position. I have always been a finicky sleeper that tosses a lot before getting comfortable, so now it's worse

-It is hard with a young marriage. I'd like to fall asleep in my husband's arms at some point in my life! Eeek! And the snuggles helps me fall asleep and not toss.

-I am a normal weight, so I figure weight loss isn't really in the cards as a solution. Granted, when I was underweight, those seemed to be the best years since my CFS diagnosis. Whatever that means.



So to my real question, about efficacy and if it's worth it.

I do realize that a surgeon will want to sell you a surgery. Yes, I get that and will be aware/critical. Who do I go to first? An ENT?

So most importantly.....what do you know of people who have had this done????

[Mary Z]

I just wanted to say I considered the surgery and saw a well recommended ENT who did a thorough exam and said I wasn't a candidate- hopefully you'll find someone as honest. Sorry I couldn't give any practical help since I haven't had the surgery. Good luck.

[cindjo717]

Also a Pulmonologist might be the way to go with a specialty in sleep study. My ENT also said I was not a candidate, but always get second opinions and make sure they are knowledgeable on sleep study. As it turned out, once the sleep study was said and done and I was given the script for a good machine, my ENT knew absolutely nothing after that. Never even looked or asked for my data to see if it was working. Did not even know what APAP was.

[Burkebang]

I am 41 years old and have been on CPAP for a little over 1 month and my fiancèe is pregnant. So I share many of your concerns.

My ENT tells me that surgery is only done in an attempt to relieve the snoring sounds. History has shown surgery to be ineffective in dealing with sleep apnea. Removing the toncils and any polyps can have an effect, but have little hope of curing sleep apnea.
I will be following this new surgical method very closely though: http://www.newswise.com/articles/henry- ... leep-apnea

Since we can't cure it, we have to learn to live with it as comfortably as possible. You say that you are on APAP and your AHI is basically 0. That tells me that you are getting WAY to much pressure and that your Min pressure is way to high.This will lead to difficultys with going to sleep, which you also have. If you have zero AHI, you are not getting your pressure adjusted automatically and are really just "overdosing" on constant pressure CPAP air.
What I think you need to do is to trade in some AHI for more comfort. So what is your min-max pressures?

I would try to set a wide APAP pressure range, I use 5-20 myself. It does not take me any longer to go to sleep with the mask on than without. I normally have an AHI between 3-9, but my pulseoximeter shows that none of these events leads to any desaturations, so they pose no health risk. Remember that an automatic machine NEEDS events to be able to adjust your pressure.

Remember that if you are uncomfortable, you're much more likely to quit your therapy. Even if you just do constant pressure CPAP at 5 cm H2O, you'll be MUCH better of, than with no therapy at all. The therapy does not have to be 100% perfect to eliminate all your symptoms of sleep apnea.

[Pugsy]

I think it depends on the surgery. Mandibular advancement vs UPPP or other and just how good of a candidate you are. Also need to make sure that your idea of a "success" and the surgeon's idea of "success" are the same. There are several surgical options with varying degrees of success depending on the individual's physical problems. ENT would be my first stopping point.

[archangle]

Don't do it. The risk vs. potential benefit is just too high for most of us.

If you have problems with the CPAP, you disconnect it and no harm done.

If you have problems with surgery, you're stuck with the negative consequences for life.

Be particularly cautious about UPPP surgery. It makes some major changes that may not help, may help for a while, but then you might need CPAP again. After that, you've removed some of the "plumbing" in your breathing/eating system and you have various problems because some of the separation between your mouth and nose is gone.

A lot of people on this board are skeptical about the probability of success with CPAP surgery. Surgeons may claim high success rates, but their definition of success is a LOT different from yours.

There are a lot of chop-happy surgeons out there. Some may see dollar signs, some may be feeding their egos, some just have the bias that they want to believe that what they're doing is a good thing.

[HoseCrusher]

The plastic smell is from the outside layer of the plastic curing. To remove this smell you can take your hose and soak it in a bath of the hottest tap water you can get. You don't want boiling water, just hot tap water. Let it soak until the water cools off, then replenish the water with more hot water. Do this for about an hour.

Next you have to dry things out. Hook your hose to your machine and let it run for 8 hours, or so. This will throw off your "numbers," but you need air flow through the hose to get rid of the odor.

This process will cure the plastic so that it won't off-gas any more.

[SleepingUgly]

I would talk to an ENT, ideally one who knows something about OSA, and see if you have anything to operate on. To be honest, about the only surgery I can see curing you that is NOT a radical surgery is a tonsillectomy IN THE PRESENCE OF VERY LARGE TONSILS. If you have a deviated septum or enlarged turbinates, fixing that will help you tolerate CPAP and at best perhaps lower your pressure, but I can't imagine it curing you unless you are so obstructed that you aren't even able to breathe through your nose hardly at all (in which case you'd have a tough time tolerating CPAP). Besides those two surgeries, the only one with a high success rate (other than a trach, which I assume doesn't interest you) is the maxillary mandibular advancement surgery, and I would guess you wouldn't want to go there at this point. The rest of the surgeries offer you no guarantees (well, none of them do, actually) and I'd be very skeptical of anyone who said that there was a good chance of success with them (they're a crap shoot, IMHO). As someone else pointed out, "success" to you means getting off CPAP entirely, whereas "success" to the surgeon may be halving your AHI.

I think there is a good chance you will adapt to CPAP and fall asleep faster than you are now. The smell of the tubing has already been addressed. As far as getting up with babies, you will get better/faster at masking up during the night, and sleep deprivation will facilitate falling back to sleep. If you're nursing, another option is for your husband to hand you the baby while you stay on CPAP and nurse in bed. It may require him to get up with the baby more than you. Assuming he's got a "normal" ability to tolerate sleep deprivation and you have chronic fatigue, in reality, you will probably need to rely more on him to get up during the night anyway.

Not that you asked my opinion about this, but when the time comes, I would strongly advise you to teach your children to sleep on their own. Your life is going to be very difficult if you create a situation like many parents do, with kids who don't go to bed when you put them down, and worse, come into your room and disturb your sleep. If sleep is your achilles' heel, as it is mine, it's imperative that you train your kids to sleep. It is also, IMHO, best for the children, although I know there are some in favor of co-sleeping, etc. that would argue otherwise (and my arguments are more compelling! ). Read Jodi Mindell's Sleeping Through the Night for more info on this.