Surgery: My final option. Death is better than this....

[Guest]

Hello All,

This post is just a catharsis to others who understand. Although I was oblivious to it until Jan this year, my apnea has been negatively affecting me for better than twenty-five years. My apnea is mixed—
central and OSA. The effects became noticeable only about 18 months ago. Trips to the Quacks (With good reason, my personal term-of-endearment for all physicians.) began with a non-distinct fatigue. “Doc, I have no gas, no fuel, what’s wrong?” All the quacking responses were wrong. I discovered my OSA months later only after sharing a hotel room with an old HS buddy. He snores, but he said that mine put him to shame. My wife had gotten so accustomed to it that she no longer heard it. She denied that I snored at all. (I don’t understand...don’t ask.)

Something that makes me unique is that I survived a horrid lupus-like childhood illness that an entire platoon of Quacks predicted would be my undoing by my early twenties at most. They were wrong. After turning 35, and being in remission for 20 years, my outlook on life changed. It was more upbeat. There were periods throughout my adulthood where I did not “feel well.” I attributed it to remnants of my odd life-long illness. The reality is that I suffered from central apnea. During my early 20s, an old roommate told me that I “stopped breathing” while sleeping, but I dismissed it because, to me and my standards, I felt A-OK. My remnant symptoms would send most people running for a quack, but they were SOP to me.

My functioning was pretty good through Dec. 05, but then it felt as if a severe flu had set in and never improved—minus the sneezing and sinus. I never really felt normally tired or sleepy; I felt indescribably awful and the symptoms were worsening. The perfunctory sleep-study was finally completed, and CPAP was started in Feb. this year. My hopes were high, but being a hose-head is not easy. After several months of nasal attempts with no improvements, a FF mask was tried. It seems to help some, but I can get no more than 5-6 hrs on it. After several months of dedicated effort, something else must be attempted. I still feel terrible—all the classic symptoms plus some odd ones. A single beer will put me out cold.

Consult with an ENT revealed that my nasal situation is a mess from multiple broken noses. The throat area is textbook narrowed. My weight and physical condition were good prior to the acute onset. I could run 1.5 miles in 10 minutes. My jaw structure is deformed per medical perspectives. Per the ENT Quack, he believes my OSA can be cured. He recommended the nose repairs, all the draconian throat procedures, and a mandibular advancement. He does not perform the mandibular procedure himself, so his opinion is unbiased there.

The nasal procedure will be performed on 8-24-06. The throat is scheduled for 10-3-06, but I will allow that only as a last resort. The jaw advancement will follow the nasal procedure. My sister had one for another reason, and although they are nasty, they are still not as bad as the throat slash and burn. (Shudder) The misery of surgery is no mystery to me, but I welcome it for even a chance at improvement.

So my hopes are measured for the cuttings. However at this point, I no longer care. I will attempt anything. It is questionable as to whether life is worth living physically feeling the way I have for so long. The epiphany occurred to me the other day that most of my life-problems originated with apnea. I’ve been on anti-depressants since 1999 with little improvement; my insomnia became intolerable at the same time after growing progressively worse over many years. BP meds were required. Sleep has always been a challenge, even during adolescence. I jokingly referenced it as “combat slumber” because of the thrashing in my sleep. In 1999, I capitulated and turned to meds. That probably only exacerbated the problem.

Thank you if you’ve read this far. Diaries are supposed to be beneficial. A psychotic rage seems appropriate for the situation, but I have neither the physical nor emotional energy. Maybe I can enjoy that after improvement. My central apnea can be treated effectively. That was discovered by me and no Quack. My OSA prognosis is good. After finally reaching middle-age, I may finally discover what it is like to truly sleep. I can’t imagine it.

I’ll keep you posted if you are interested.

Thanks again for reading this novel, and more importantly, understanding my position.

Joe

[GoofyUT]

Sorry that life has presentd you so many considerable challenges.

Before you go get yourself slice and diced, you might want to investigate new, emergent technology as represented in the ResMed AutoSet CS2 ASV ADAPT or the Respironics HeartPAP. These brand new machines are specifically designed to manage SDB of a central/mixed origin, I believe. And, they represent a MUCH less invasive alterntive than surgery.

Just a thought.

Chuck

[Guest]

Thanks for the tip, Chuck. I will investigate it. My inclination is against mechanical assists though. My views are biased as a consequence of my health history. I prefer to live life on my own terms.

I spent 8 years in a life & death struggle with something completely unknown. I was the prized lab-rat at a university med center for months on end. I was there alone since it was a day’s travel from home and stared down death himself alone at the age of 12. What was done to me in the name of medical science is almost unspeakable. I pride myself on being no wimp.

Don’t get me wrong; my life has been a riot. Living for years on seemingly borrowed time gives one a unique perspective and appreciation. The only thing precluded from me was children. Other than that, most are envious of my visible public life.

I’ll take the knife if it gives me a shot at normalcy. It’s a priority for me since I’ve never known it. My central apnea is likely related to my autoimmune disorder. I’ll beat apnea; I beat worse as just a kid.

Thx,

Joe

[quote="GoofyUT"]Sorry that life has presentd you so many considerable challenges.

Before you go get yourself slice and diced, you might want to investigate new, emergent technology as represented in the ResMed AutoSet CS2 ASV ADAPT or the Respironics HeartPAP. These brand new machines are specifically designed to manage SDB of a central/mixed origin, I believe. And, they represent a MUCH less invasive alterntive than surgery.

Just a thought.

Chuck

[Guest]

The nasal procedure will be performed on 8-24-06. The throat is scheduled for 10-3-06, but I will allow that only as a last resort. The jaw advancement will follow the nasal procedure. My sister had one for another reason, and although they are nasty, they are still not as bad as the throat slash and burn. (Shudder) The misery of surgery is no mystery to me, but I welcome it for even a chance at improvement.

It sounds like you are doing all you can and the MA has proven to be highly successful, so you are likely to experience great improvement. Just one thing:
SKIP THE THROAT PROCEDURE! I realize you are at the point where you're willing to try anything, but don't let that feeling of desperation override scientific medical evidence. The UPPP surgery has proven time and again to be ineffective. Do the research. There's lots of it. If that's not enough to convince you to forgo the UPPP surgery, perhaps the best measure of success is talking to the individuals who have had it done; those with the misfortune of being (mis)guided into to having this surgery by their doctors. The good news is we see fewer and fewer physicians suggesting the UPPP.

Following are just some of the snips of posts from here and TAS where people who have had UPPP share their unsuccessful results:

Welcome to the forum! I had UPPP and Deviated septum surgery in 1995. 6 months later had a cpap. I'm also claustrophobic. There are masks out there now that you won't feel closed in on while wearing. It's worth a try, because this treatment really makes you feel better. If I had it to do all over again I would still have the nose done (I could only breathe using 1 nostril) but would not have had the UPPP. Good luck in your treatment, whichever path you choose.

Hopefully before my insurance company commits to buying this machine I can convince them to reimburse me for an apap. Looking forward to a good nites sleep again since my UPPP did not work out that well. Thanks again for all the posts it is helpful to know that there is a place to go for good advice from people who have been there and done that.

I've had both and neither were lasting. I had the UPPP 20 years ago and it was moderately effective for a year or so. I recntly had three sessions of somnoplasty and I'm back to where I started. CPAP is the only thing that I found that works.

A bit of history. I was first diagnosed about 10 yrs ago and opted for UPPP surgery (uvulopalatopharynogoplasty) because after my first experience with CPAP in my sleep study I didn't think I could deal with it every night. Well, what they tell you before the surgery and what happens is like night and day. Their description of the surgery "It will be like the worst sore throat you have had." Actual experience, weeks of extreme pain, months to feel better in the throat and over a year before my throat felt normal. The good part was a 35 lb weight loss because I couldn't eat. The surgery (or maybe the weight loss or maybe both) worked for about a year. 1 1/2 years later I was back to exhaustion and depression due to poor sleep. Another sleep study and I started CPAP.

I agree on NOT having the UPPP. I had it done about 7 years ago and wish I never did. I would try the Pillars or Somnoplasty over UPPP.

Gip

I had the UPPP surgery several years ago and for almost a year following surgery I slept restfully. Now the osa is back.

I have had the UPPP and really couldn't tell a difference afterwards. The treatments for Sleep Apena have various results for different people based on my reading and participation in this forum. If I were to start my journey in trying to cure my Sleep Apena again I would have started at Stanford to begin with or would have consulted with a Doctor that could tell me actually what the cause is for my sleep apena. I feel confident with the staff at Stanford who in a matter of minutes while being examined told me that it was my tongue causing my sleep apena not my UPPP. UPPP in my opinion for me was a waste of time and whole lot of pain for no results.

Out of frustration, scheduled surgery. UPPP, turbinat reduction, and septoplasty. For what it's worth, it's as painful and miserable of a process as you've all likely been told about. I knew it was going to be painful and knew it had a less than stellar chance of success, but I wanted to roll the dice to see if I could untether myself from the need for a machine/mask. This was early April 2006.

Recently had a new sleep study and found that the surgery was not successful (altho I was told that there may still be some healing to do).

A plastic surgeon and orthodontist both agree that I am a good candidate to have both my upper and lower jaw advanced. I have already had the UPPP with deviated septum done, to no avail.

My sister had the UPPP surgery and it didn't do a thing for her, other than make her talk funny, and whatever she drank come out her nostrils.

My friend who swore by UPPP and had his done by one of the best surgeons around, now has his apnea back full bore, after less than a decade, AND has all the swallowing issues associated with UPPP.

It's been about 2 months or so and now I have my Resperonics Bi-PAP-Auto. My pressure setting as prescribed from my doctor is 17/11.
I went from not being able to tolerate a CPAP from 10 years ago to falling asleep in about 20 min or less the past for nights.
Another little tid bit of info I had the UPPP done and all the other nasal goodies that goes along with it. This was in 1997.

Beware of UPPP surgery. Lots and lots of pain, very few success stories. My untreated AHI 1 year after surgery was 94, and I still snored.

Well ya'll, unfortunately, I had the UPPP surgery a year ago last January. I thought it helped tremendously, until I had another sleep study, and the results were worse.

I was going to say too, about the snoring...I've definitely stopped snoring with my UP3...but, I still have severe apnea, so someone can be fooled if they think if they aren't snoring, they don't have apnea any more.

[NightHawkeye]

Joe,

I agree with Chuck, there may be other things you might want to try before surgery. I had some surgery not so long ago, and although the physician was highly rated, he made a number of mistakes. I'd consider surgery only as a last resort, and even then I'd attempt to get every detail nailed down exactly prior to the surgery.

It sounds as if all you have tried is standard CPAP, and only with a limited selection of masks. You didn't indicate that you have monitored your nightly therapy results other than by how you feel. A number of us here use software to guide us in adjusting our machines, and I recommend it highly. Without the software I doubt that I'd ever have gotten my therapy under control. In seven months of treatment, I've tried CPAP, APAP, Auto-BiPAP, and finally settled on straight BiPAP which has been working well for me for several months now. I've also gone through five masks. Each mask has been an improvement for me though, so I feel like the expense was justified.

It sounds like you've been through a lot, Joe. Listen to the recommendations provided by folks here. Many of us here have been through a lot as well. Use the recommendations that you think might work for you. Above all, get a machine that allows you to monitor your therapy. That alone will provide valuable clues about how to adjust your therapy for improvement. Machine cost is insignificant compared to the cost of surgery.

Regards,
Bill

[FJB]

Thank you for the effort! Yes, I saw those posts previously. I've been lurkin the board for a long time. I'm registered as FJB, but it isn't showing for some reason. My side-effects from the machine are bad.

I saw the various procedures here: http://www.sleepapneasurgery.com/ All I can say about some is, "No friggin way! You crazy Quack! YOU do it first..."

My ENT Quack talked about some minor throat procedures: radiowave treatment, tongue redaction etc. But when he got on the phone to schedule the nose, he started talking all this extreme BS. I said, "NO!" (Expletives deleted.)

So I won't do any weird stuff. Tonsil removal maybe, but nothing radical. My money is on the MA, and they are pretty slick now too. The nose has to be fixed. I saw it—broken too many times in my wild youth. The MA is well-justified too. It may not work, and I’ll be back on CPAP anyway. The MA is a ways out, so I can try alternatives in the meantime. The nose will assist any CPAP therapy. So, I'll be careful.

Thanks for your input. I truly appreciate it. You know, it feels better just talking about it. I have no one to discuss it with. It terrifies my wife already. So I spare her.

[kteague]

Joe,
Lots of folks here can relate to your desperation. Has the doc showed you your xrays compared to a normal throat? Have your tests been reviewed by a doctor not recommended by the current doc? Have they proven to you why you need surgery? If this were someone you love dearly and you were the objective party without a sleep deprived brain, do you think you would advise for them your plan of action? Let us know how things go for you. Certainly hope you come back with glowing reports. Even if not, please do continue to use us as your sounding board. Maybe you'll be one of the ones that do benefit from surgical intervention. By the way, since 1999, are you still thrashing in bed? I did that before my PLMD was diagnosed, and some meds made it worse and made me sleep like a tormented soul.
Hope you find some relief.
Kathy

[kteague]

You must have been typing while I was. I see you have seen evidence of the need for some of the procedures at least. Best wishes on whatever paths you pursue.
Kathy

[Snoredog]

I haven't looked down your throat so I can't say you need the throat surgery or not (neither can anyone else here).

Most "obstructive" OSA is caused by the tongue falling into the back of the throat. Removing tonsils, uvula and part of the palate only makes the hole bigger for the tongue to fall into. Reason most UPPP surgery fails to address OSA. But sometimes making the hole larger makes it harder to block.

Moving the tongue forward via GA reduces the tongue's ability to block the airway.

As for the nasal surgery: I had that procedure done many years ago, it does help you breathe and it helps you not only during the night but during the day also. It is the FIRST surgery I would have performed. You will need to breathe through your nose when your throat is sore from a UPPP.

As for the UPPP, I would only have my Uvula "trimmed" and not completely removed, but again, I haven't looked down your throat either, that is a call you have to make. That uvula does have a purpose, it keeps food from going back into the nasal cavity.

[Guest]

Long term effectiveness of UPPP is abysmal.

Some links for you:

UPPP Ohio Sleep Medicine Institute 10% success rate?

Jul 03 2005 subject: Mayo Clinic - Interesting article

Upper Airway Surgery Does Not Have a Major Role in the Treatment of Obstructive Sleep Apnea by Barbara Phillips MD

LINKS to surgery, turbinates, Pillar, TAP experiences Discussion topics about UPPP are on bottom third of page.

the nasal work (usually inferior turbinatectomy and septoplasty) is usually well tolerated, has a relatively short (1-2) week recovery period...and actually does what it is supposed to...help you use CPAP devices and lower the pressure required.

I wholly recommend the nasal surgery. You can't use CPAP without having a free nasal airway.

Tonsillectomy is probably a good deal...but this is a your-mileage-may-vary situation. It works very well in children who have OSA. However, as adults, it is less clear. Our airways morph as adults and the value of having tonsils out is less clear than in children. As adults, a tonsillectomy also is associated with more pain and is less well tolerated than in kids. The one thing that it will do is remove large obstructing tonsils as a variable...sooner or later they should be removed just to clarify the fact that you've done all you can to address the issue (at that point of potential obstruction).

So a tonsillectomy gets a qualified recommendation.

Now, there's the UPPP. That is a combination of a uvula removal or flap, trimming the palate , and tucking up the posterior walls of the pharynx.

The UPPP has many issues associated with it. First, in the vast majority of people, IT DOES NOT CURE OSA. The studies out there are old, not based on scientific method (using post-op subjective interviews instead of sleep lab data), and have at best a 30-50% "improvement" in post-op OSA symptoms.

Second, there is a high relapse rate in most people with a short period of time. If it did work in the first place, as you age your oro-pharynx becomes more lax (or if you gain weight, the neck compresses the airway)...and the few milimeters of new airway is re-collapsed.

Third, the UPPP is associated with pain and discomfort (that varies from person to person) for 1-3 weeks. Because of raw surgical sites in the back of the throat , swallowing anything (including your own saliva) is painful post-op.

Fourth, the UPPP has a few annoying side-effects that happen in a fair number of people. These are not "complications" (that may include bleeding, infection, etc...)...these are side-effects that commonly occur with the surgery. These may include a persistent foreign body sensation in the back of the throat, liquid nasal regurgitation, and an inability to seal some PAP devices to effictively use them.

So, with respect to the UPPP, my perspective is that the risk-benefit ratio is BAD. The risks (lack of a cure, relapse, pain, side-effects) do not justify the potential benefits (the low cure rate associated with this procedure).

to see the entire thread at TAS, click on this: Surgery

[FJB]

Thanks a million for all the good info. There's no way I'm going to have the UPPP done. I saw what after looks like, and the machine is better than that. I dislike things that can't be reversed.

Shrinking the tissue sounds about as radical as I'm willing to go, and that is in multiple stages.

I have many problems with CPAP, and they may improve with the nose job. My nose is badly obstructed, and the full mask may only be partially effective. I am improved slightly, but I don't think enough to where I should be.

My patience is wearing thin. Life is passing by while Iamb essentially in a slow misery. I feel bad enough to characterize it as pain. The differing CPAP methods must be tried for months before moving to something else.

This is a frustrating condition. You all understand, and I really appreciate the encouragement. After a two-hr snorkel nap, I awoke feeling and looking like the Doughboy. That machine actually inflates me, and I am continuously musical.

[FJB]

Kathy,

I am still an "active" sleeper meaning that I move around frequently. I no longer accidentally smack my wife or steal her pillows.

One of the residual sympoms of my childhood illness is joint damage. I am constantly in a state of pain. So I attributed my movement to that.

My case is so unique that Docs look at me and shrug. Many revert back to what they know. Normally I would be all over this problem quickly, but I haven't the energy, drive, and am even apathetic.

Dealing with the med/ins system is trying.

Joe,
Lots of folks here can relate to your desperation. Has the doc showed you your xrays compared to a normal throat? Have your tests been reviewed by a doctor not recommended by the current doc? Have they proven to you why you need surgery? If this were someone you love dearly and you were the objective party without a sleep deprived brain, do you think you would advise for them your plan of action? Let us know how things go for you. Certainly hope you come back with glowing reports. Even if not, please do continue to use us as your sounding board. Maybe you'll be one of the ones that do benefit from surgical intervention. By the way, since 1999, are you still thrashing in bed? I did that before my PLMD was diagnosed, and some meds made it worse and made me sleep like a tormented soul.
Hope you find some relief.
Kathy

[snork1]

I agree with avoiding the throat slicing and dicing, which has a very low success rate.

I vote highly for getting your nose fixed no matter what route you take.

And have you considered checking out a dental device to move your jaw forward at night, to confirm the MMA will work, at the very least, before going the MMA route?

I am pursuing the dental device (TAP Titanium) myself right now with EXCELLENT results.

Just a few thoughts.............

[FJB]

Can you post some more info on yours? That is a consideration too, especially short-term. I've seen some that work on the tongue with a suction action to hold it forward.

My dad passed away at age 56. I suspect that the same thing killed him. Our jaw structure is the same.

Thx!

Joe

I agree with avoiding the throat slicing and dicing, which has a very low success rate.

I vote highly for getting your nose fixed no matter what route you take.

And have you considered checking out a dental device to move your jaw forward at night, to confirm the MMA will work, at the very least, before going the MMA route?

I am pursuing the dental device (TAP Titanium) myself right now with EXCELLENT results.

Just a few thoughts.............

[snork1]

talkaboutsleep.com forum has the only dental sleep medicine specific forum that I know of, and there is a LOT of discussion going on there right now.

"http://www.talkaboutsleep.com/message-b ... m.php?f=10"

You can find a certified "sleep dentist" with the search engine on the appropriate site:
"http://www.dentalsleepmed.org/FindaDentist.aspx"

I have tried the Aveo TSD "tongue sucker" but was just not able to get past the comfort issue.

I am gambling on the TAP right now and some others are trying out the Somnoguard AP. Verdict is still out, but a fair amount of good results are in.

The problem with dental appliances is they work or they don't depending on the person. There is not a lot to discuss, unlike CPAP which can fill endless topics on tweaking the therapy. So if the dental devices work, people just tend to disappear from the forums and get on with their life. Very few are willing report back and put up with the derision that is usually aimed at people trying alternatives to CPAP for treatment.