Disgusted newbie; Sleep apnea

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[parts of this thread were copied from our old forum]


Sep 27 2005, 05:48 PM Post #1
Brian wrote:
Hi everyone,
My name is Brian. I am A 39 year old male with sleep apnea for as long as I can remember. I am 5/6 and about 230lbs with an 18" neck and extra skin with a small airway I am told. Not morbidly obeese but not thin. One night the blodflow cezased to 2 small arteries in my eye so I lost 70% of my vision in my right eye. The eye Doc said Sleep Apnea could definetly have caused it and it could happen to my other eye. I tried cpap and could not deal with it. It is depressing and cloustrophobic. It was set at 8. I was on my way to have the tounge surgery and partial upp but something told me this is not the right way and I dont want to be sorry. One of the Docs said I should try A Bypap. At this point I gave back the Cpap and when my girlfriend hears me snooring she rolls me over.I am still snooring and still tired. I am on a list for The Montefure Sleep center Bronx NY and there is a 6 month waiting list no matter who you know. A seperate doc told me years ago the pillar woud not work for me.I also had one visit with the palate lazar with no results years ago. It is depressing to think about the rest of my life with cpap. I just discovered this board and you have lots of good info and ideas. Thanks for listening.

Do I wait 6 months and do nothing?

Try the Sono pillow,does it work?

Find a Dental Dr and start over? and where.

Help,
Brian

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Sep 28 2005, 12:06 PM Post #2
coco wrote:
Lets see!!!
loseing my eye sight or CPAP.
CPAP sucks I don't want people to know I use such a stupid device.
What does my wife really think about cpap?
I am with you I hate it!!!!!
But I like seeing or should I say living.
I have been dealing with severe apnea for five years now, most likly had apnea most of my life. Take it from me it only gets worst.
If you have to wait 6 months to see a doctor that can help, then wait. But do not do nothing. You think your wife or family wants to lead you around because your blind, or worst find you dead in bed?
please take care of your self!!!!!
coco

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Sep 28 2005, 04:27 PM Post #3
Brian wrote:
Thanks for the kind words Coco.

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Sep 28 2005, 06:47 PM Post #4
gernia wrote:
Brian -
If I were you and it's that bad, I'd camp out in the Sleep Center's office and demand to be placed on the list for a spot within two weeks. Your health cannot be subject to "I'm sorry sir, you'll have to wait for 6 months"...
by then, you might be dead. If they tell me that, then I would get my family doctor or eye doctor involved, or even my lawyer. 6 months is not acceptible in your case.

Take a stand and don't give up until they give you an appointment or the police have to drag you out of the Sleep Center office. Don't be rude, but be terribly persistant. You've got more at stake that most, especially if you've already lost your eyesight in one eye as a result of Sleep Apnea.

Stick to your guns and DON'T GIVE UP until they give you an appointment within two weeks.

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Oct 1 2005, 06:39 PM Post #5
ConnCarl wrote:
Brian,
Lots of interesting replies in this thread. I've never heard of an eye doctor or lawyer resolving anyone's OSA before. Personally, I don't think that pounding the table and making demands is likely to get you to the head of the line. Remember, everyone with untreated OSA is at elevated risk of heart disease, hypertension, and death. Yelling about your "lawyer" in a modern, specialized medical practice is likely to have roughly the same effect as shouting, "I have a bomb" in an international airport.

I would suggest that you consider your options very carefully before you opt for surgery. The probability of attaining a favorable surgical outcome is not good, and most OSA surgery bears a permanent and unpleasant side effect profile. CPAP desensitization is something that I would highly recommend.

Your insurance company may not be willing to pay for a BiPAP for someone in your situation. BiPAP is not normally considered to be optimal therapy for an individual with such modest pressure requirements.

You might want to consider asking for a Respironics CPAP machine with C-Flex or a similar product from another manufacturer. C-Flex reduces pressure on exhalation, much like BiPAP does, but at much lower cost.

At least half of the battle is getting the right machine and the right interface, and that is where I would suggest expending the most energy. If you don't like wearing a mask, try nasal pillows or an Oracle. Don't be shy about asking the sleep lab or your DME provider to let you try a whole range of products until you find one that works for you.

Good luck! Carl
"You knew the job was dangerous when you took it, Fred." - Superchicken

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Oct 3 2005, 08:15 PM Post #6
Brian wrote:
Thank you both for your advise. After reading the stories on this board like yours Carl, I am not trying the surgery so fast. I am going to another sleep Dr. untill I can get into the one I originally wanted. How would I know if a dental mouthpiece is for me, or should just try one of those new masks and a pap pillow because I like to sleep on my side. Any comments on sleep pillows like Somnopillow? Thanks again. It is amazing to have this board. Brian

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Oct 5 2005, 05:36 PM Post #7
I would suggest a consultation with a board-certified sleep specialist. He or she can send you to a dentist or maxillofacial surgeon for an examination of your facial and airway structures.

Although there are many aggressively-marketed mandibular positioning devices available, I have yet to see any scientific evidence that they provide significant relief for OSA sufferers.

If you have good insurance, and/or the cost is not an issue, please consider trying a CPAP at home. As others, including the Administrator of Apnea Board can attest, I'm not exactly the CPAP Poster Boy. But my CPAP therapy is complicated by issues that shouldn't affect you.

I require very high pressure (20 cm or greater) and a full-face mask because of past UVPPP surgery. This is a terrible combination, since FF masks typically do not seal well at pressures over 12 cm or so.

Your pressure requirements seem to be very modest, at 8 cm. This will likely make desensitization easy. In addition, you should be able to select the interface you like best, without having to worry about how it seals against high pressure.

Your sleep lab or DME provider may be willing to let you try different masks and machines to see what combination is most comfortable for you. Most of us would never consider buying a new car without a test drive...why should we accept a CPAP machine without trying it out first?

Good luck! Carl

"You knew the job was dangerous when you took it, Fred." - Superchicken

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Oct 6 2005, 09:24 AM Post #8
sandygalsleeps wrote:
Hi Brian,
I have had CPAP for 15 years at least and I would not look back. I use to fall asleep at the wheel just about, and didn't sleep much at all at night. When working out the average sleep I had it was about 2 hours over a 8 hr. period.
I have a narrow airway as well and have to use a small mask because of the shape of my face.
I know it is hard using CPAP at first, but I can honestly recommend it. It is not disgusting to think of the rest of your life with it.
I have even been able to lose weight and become a lot more alert since using it.
Try using a humidifier with it and also a chin strap which keeps your mouth closed when using it. I feel that it may be the fact you are breathing with your mouth and your nose that is giving you the suffication feeling.
Keep your chin up and know that it does work. It takes time to get use to it.
Oh and by the way you can sleep on your side with cpap. I sleep on my stomach with CPAP. I actually had an argument with a sleep technician once because when they wired me up, one of the plugs kept coming off because it was too short for the position I sleep in. In the end he had to lengthen it because there was no way I could sleep on my back.

Cheers Sandygal

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Oct 6 2005, 08:23 PM Post #9
SleepyHead wrote:
After reading all the replies to this post, most will see how broad the opinion base is for CPAP therapy. CPAP therapy is just like any kind of prescribed form of treatment...some people will like it and work for them and for some, it just wont. Although I am an avid promoter of CPAP therapy, sometimes, it's just not right for someone. It's all about options. Carl's mentioned some excellent routes to go such as oral devices and surgery, but as he's mentioned, desesitization is probably the best first step. Part of that is if the mask fits properly and does the person in question like the design and feel of the mask. With so many types of headgear on the market these days, there's a huge selection. Other things to consider are how the CPAP system is set up in your home, do friends and family support your choice to be treated, and so on. All these things are important for someone to truly accept CPAP. I constantly encourage my patients to give it a good month or so to get used to the treatment and if they say, "I Don't Like It"...explain why. There's almost always a solution to most complaints.

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Oct 14 2005, 04:29 PM Post #10
Brian wrote:
Thanks everyone for the replies. I ordered the Somno pillow temporarraly, I am changing insurance Nov 1 then I will try a new doc and im sure CPAP. Anyone ever try the pillow. it is FDA approved. Brian