What should I do? Surgery? CPAP not working

[IHopeToGetBetter]

Here is my situation - I am wondering if I should procede with surgery after struggling with CPAP.

I'm a 24 year old male, who weighs 215lb and was diagnosed with Sleep Apnea with an AHI of 18 and a oxygen saturation of 79% last year in July of 2009. I tried CPAP therapy from September until December and again for 2 weeks in February, but was unable to tolerate it since I was sensitive threw off the mask unconciously in the middle of the night. I have so far tried a nasal mask, a full face mask and 2 nasal pillows. I think I have trouble scratching my face in the middle of the night and I am also a mouth breather, but the full facemask did not work. I usually keep the mask on for 2-3 hours.

I have tried other remedies, such as sleeping on my side, losing 10 pounds and an oral device to some success. The device like a Rematee T-shirt, to keep me sleeping on my side, works with some improvement, although I still sleep on my back anways. The most promising is a cheap plastic oral device (like the Snore-ex), which is similar to the Mandibular advancement device made by doctors. This device, I usually kept in my mouth, but not 100% of the time. I noticed I dream a bit more, which I know is good, but I do still have focus and some daytime sleepiness.

Because of my struggles with CPAP, I had scheduled a surgery in 2 weeks. I know at the very minimum, I would like to take care of my nose with a Septoplasty and Turbinoplasty, which my doctor says will improve my quality of life, possibly allow me to tolerate CPAP or a dental device more, and take 1-2 days recovery. I also suffer from allergies, stuffy nose and a lot of phlegm.

At first, I was recommended by the first doctor, Dr. Liberatore, to remove my tonsils and take care of my deviated septum and enlarged turbinates. Since then, I got a second opinion with Dr. Steven Park, who I consider an expert in the field.

However, I am also considering dropping the bomb and taking care of the other issues, since I want to get a lot better. Dr Park told me with a Uvulopalatopharyngoplasty UPPP, to trim the soft pallet and tounge I can expect a 40% chance of success and 1 week of recovery. However, using Friedman's test, I am a borderline candidate at best for just UPPP, since I have a moderately high tounge position (level 3), and medium tonsils. My doctors biggest concern was that on my back I have tounge collapse.
Because of this tongue collapse issues my doctor wants to do Genioglossus advancement, and tie my tounge with a string to suspend it, along with a hyoid Suspension and the UPPP. This will add an extra week to recovery, make surgery longer, but have an apparent 80% success rate/satisfaction rate.

From my perspective, I want to get better soon and stop struggling. I suffer from attention problems ADHD and mild/moderate depression in addition to my oxygen saturation going to 79%. I'm hopeful that my ADHD will improve once my sleep does, but it has not with the oral devices/side sleeping. However, I am currently looking for jobs, so I'm thinking that I cannot take 2 weeks off, but I might be able to get away with it. I want to go ahead with the nasal surgery and see what happens. Does anyone have any advice with what I should do - should I do all the sugeries, just the nasal surgery, or try the dental device or struggle with CPAP?


Any input would be appreciated. How painful is surgery and what was your experience? The reason I wish I could use CPAP is my titration showed my AHI drop to 0 and REM sleep normalize. I also might want to try a APAP, even though my pressure is low because I have spoken to people who said that worked... also I liketo drink every once in a while. Dr. Park says I have some options, but also says I am in the 10% that he says is the right fit for surgery. .

Thanks,

Tyson

[Wulfman]

My recommendations:

Register on the forum......listing all of your equipment, pressure and other machine settings.

Stay the Hell away from UPPP surgery.

Do some nasal rinses/cleansing before bedtime so you can breathe through your nose. (it'll help reduce your mouth-breathing)

If your humidifier setting is too high, it'll have the effect of closing up your nasal passages. Better to use lower or passover humidity with your machine.

Endeavor to persevere with your CPAP therapy. (you haven't even scratched the surface with options yet)


Den

[Julie]

You need to try various full face masks, get the correct size, a really proper fitting that includes lying down someplace. Cpap.com offers 30 day insurance on returns if you're interested. Don't give up because the first mask didn't work out - if we all did that, none of us would be here.

[rosiefrosie]

Den & Julie are right. Having surgery with a 40% success rate is not worth it. Most who have the surgery done need to continue with c-pap to treat their apnea. It would be a waste of time, money and pain (and believe me it hurts, especially the older you are) to go thru all of that and not have it work. I also think you need to give x-pap more time to work. It is a struggle at first but the benefit of working thru it is worth it. Just my 2 cents.

rosie

[DrNoSA]

You are having some of the same problems I had back in '01-'05. My odyssey is in the back of a book I published six months ago entitled, 'Deadly Sleep.' Four surgeries included UPPP, hyoid myotomy and two rhinoplasties (septoplaty, turbonate reductions, (already had a T&A as a child). I started with an AHI of 27 and after four surgeries I had an AHI of 47. I was offered a bimax, but after careful consideration, declined and went for a trach.

Here is my biased opinion regarding ENT surgery for OSA. First, forget UPPP. It is worthless. A study out of Scandinavia a couple of years ago concluded it was of no benefit. None of the ENT surgeries available today can give you an AHI of 0 (except a tracheostomy which is a good procedure in special cases). If your problems using the mask are nasal, then the ENT may be able to address those problems (like polyps or enlarged turbonates) enough to allow you to use a nasal mask or pillows successfully. In other words, an ENT cannot solve your problems by him/herself. Yes, they can reduce your AHI, but they cannot eliminate all apneas and hypopneas. He/she can make you better able to tolerate your positive pressure interface. Your goal after all is an AHI of 0 and none of the ENT surgeries can accomplish that (a trach being the exception).

[SleepingUgly]

Dr Park told me with a Uvulopalatopharyngoplasty UPPP, to trim the soft pallet and tounge I can expect a 40% chance of success and 1 week of recovery. However, using Friedman's test, I am a borderline candidate at best for just UPPP, since I have a moderately high tounge position (level 3), and medium tonsils. My doctors biggest concern was that on my back I have tounge collapse.

If I'm following you, Dr. Park said you have LESS than a 40% chance of success with UPPP due to your tongue position and tonsil size?

Because of this tongue collapse issues my doctor wants to do Genioglossus advancement, and tie my tounge with a string to suspend it, along with a hyoid Suspension and the UPPP. This will add an extra week to recovery, make surgery longer, but have an apparent 80% success rate/satisfaction rate.

Which doctor wants to do that? Dr. Park?

Does anyone have any advice with what I should do - should I do all the sugeries, just the nasal surgery, or try the dental device or struggle with CPAP?

You're a mouth breather, you say, so all your trials with nasal pillows and nasal masks were worthless (in hindsight), so those don't count as giving CPAP a fair shake. You used one full face mask? There are things you can do to keep yourself from taking it off in your sleep, including setting up barriers such as taping parts of it to your face so that it requires you to wake up more to do it, or setting the alarm on your machine that alerts you if the mask is off.

Dr. Park says I have some options, but also says I am in the 10% that he says is the right fit for surgery.

What type of surgery does he propose? Is he saying 10% do well with surgery and you're in the 10%?

I don't know how much losing weight will help you in the end, but it certainly can't hurt. I would be afraid to do a UPPP. Septoplasty may help you tolerate CPAP better, and seems to involve minimal risk in the hands of a good surgeon. Drinking is terrible for apnea.

I agree that you could keep trying with the CPAP. You don't seem to have exhausted your CPAP options...

[Wulfman]

You are having some of the same problems I had back in '01-'05. My odyssey is in the back of a book I published six months ago entitled, 'Deadly Sleep.' Four surgeries included UPPP, hyoid myotomy and two rhinoplasties (septoplaty, turbonate reductions, (already had a T&A as a child). I started with an AHI of 27 and after four surgeries I had an AHI of 47. I was offered a bimax, but after careful consideration, declined and went for a trach.

Here is my biased opinion regarding ENT surgery for OSA. First, forget UPPP. It is worthless. A study out of Scandinavia a couple of years ago concluded it was of no benefit. None of the ENT surgeries available today can give you an AHI of 0 (except a tracheostomy which is a good procedure in special cases). If your problems using the mask are nasal, then the ENT may be able to address those problems (like polyps or enlarged turbonates) enough to allow you to use a nasal mask or pillows successfully. In other words, an ENT cannot solve your problems by him/herself. Yes, they can reduce your AHI, but they cannot eliminate all apneas and hypopneas. He/she can make you better able to tolerate your positive pressure interface. Your goal after all is an AHI of 0 and none of the ENT surgeries can accomplish that (a trach being the exception).

Welcome to the forum, Dr. Jones.

http://www.amazon.com/Deadly-Sleep-Your ... 209&sr=1-1

It's good to see some of the "professionals" contributing here. There have been others in the past.


Den

[SleepingUgly]

Yes, Dr. Jones, welcome and good to see you here. Stick around... Sometimes I feel like there are no doctors in this world who care very much about us struggling patients.

[JohnBFisher]

Let me echo the information you read here. I have a friend who decided on UPPP surgery instead of CPAP. Unfortunately, it did not work. He now needs to use CPAP and is now forced to use a full face mask because the UPPP surgery made just a nasal mask useless to him. It opened the upper airway so much that using just a nasal mask causes leaks through the mouth. He regrets both the cost and pain he went through for something that had no benefit.

[sleepycarol]

I would like to welcome Dr. Jones to the forum as well.

He is great about giving his views from one that was unable to adjust to cpap therapy.

[ozij]

My recommendations:

Register on the forum......listing all of your equipment, pressure and other machine settings.

Stay the Hell away from UPPP surgery.

Do some nasal rinses/cleansing before bedtime so you can breathe through your nose. (it'll help reduce your mouth-breathing)

If your humidifier setting is too high, it'll have the effect of closing up your nasal passages. Better to use lower or passover humidity with your machine.

Endeavor to persevere with your CPAP therapy. (you haven't even scratched the surface with options yet)


Den

Dr. Park is an ENT -- he saw your mouth and throat.

We however are experienced CPAP users -- and as Den says -- you haven't scratched the surface with option yet.



You can always attempt surgery later.

I would like to welcome Dr. Jones to the forum as well.

He is great about giving his views from one that was unable to adjust to cpap therapy.

Who is Dr. Jones?