Survey: how much do we want new treatment options?

[amirgilead]

Hi,
My name is Amir Gilead. I'm 2nd year med student at Sackler School of Medicine. I have been suffering for a long time from daytime sleepiness, which made my life in the university very difficult. After seeking out professional help, I was diagnosed with Obstructive Sleep Apnea. The only treatment option I was given was CPAP. I don't really understand how I am going to use this.

I can't believe that there isn't anything better than this today. I looked on the web, and there is no "gold" treatment, other than CPAP. Perhaps other companies are not working on this?

On other medical conditions, I saw that there is a lot of action. I also saw these "Willingness to Pay" studies. My hypothesis is that this kind of studies may compel the industry to bring innovations for us patients.

I decided to roll up my sleeves and do this kind of survey myself - but with your help!

I will greatly appreciate if you can send your vote on the following questionnaire, either as a reply here or to my email: dramirgilead@gmail.com

I think that after a month or two of results, it will be a good idea to do some statistics and come back to tell you what you voted!

Thanks!!

1. How old are you?
A. Up to 20
B. 20-40
C. 40-60
D. Above 60

2. What is your sex?
A. Female
B. Male

3. In Which state/country do you live in?
(open question…)

4. How long have you been diagnosed with Obstructive Sleep Apnea?
A. Less than 1 year
B. 1-5 years
C. 5-10 years
D. over 10 years

5. Do you use CPAP, if so, for how long?
A. Not at all
B. less than 1year
C. 1-5years
D. 5-10 years
E. over 10 years

6. Roughly speaking, how much your insurance covers your treatment?
A. I pay myself
B. about 20%
C. about 40%
D. about 60%
E. about 80%
F. about 100%

7. Imagine that a new device, free of side effects, against OSA becomes available that is not paid for by the state. This new device reduces the OSA severity by about 50%. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will feel sleepy only 2-3 days per week. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay per month out of your own pocket for this treatment?

A. Up to $50
B. $50-$100
C. $100-$150
D. $200 or more

8. Imagine that a new device, free of side effects, against OSA becomes available that is not paid for by the state. This new device eliminates OSA completely. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will not feel sleepy at all. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay per month out of your own pocket for this treatment?

A. Up to $50
B. $50-$100
C. $100-$150
D. $200 or more

9. Imagine that a non-invasive procedure (an injection with a standard needle), free of side effects, against OSA becomes available that is not paid for by the state. This new device reduces the OSA severity by about 50%. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will feel sleepy only 2-3 days per week. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay, as a one-time fee, out of your own pocket for this treatment?

A. Up to $500
B. $500-$2,000
C. $2,000-$5,000
D. $5,000-$10,000
E. $10,000 or more


10. Imagine that a non-invasive procedure (an injection with a standard needle), free of side effects, against OSA becomes available that is not paid for by the state. This new device eliminates OSA completely. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will not feel sleepy at all. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay, as a one-time fee, out of your own pocket for this treatment?

A. Up to $500
B. $500-$2,000
C. $2,000-$5,000
D. $5,000-$10,000
E. $10,000 or more


11. Imagine that a minimally invasive surgical procedure (performed under local anesthesia with an incision of about 2cm), free of side effects, against OSA becomes available that is not paid for by the state. This new device reduces the OSA severity by about 50%. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will feel sleepy only 2-3 days per week. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay, as a one-time fee, out of your own pocket for this treatment?

A. Up to $500
B. $500-$2,000
C. $2,000-$5,000
D. $5,000-$10,000
E. $10,000 or more



12. Imagine that a minimally invasive surgical procedure (performed under local anesthesia with an incision of about 2cm), free of side effects, against OSA becomes available that is not paid for by the state. This new device eliminates OSA completely. For example, if without any treatment you feel sleepy 7 days per week, with this new treatment you will not feel sleepy at all. This device will eliminate the need for using CPAP or oral appliance. Can you estimate the most money that you would be willing to pay, as a one-time fee, out of your own pocket for this treatment?

A. Up to $500
B. $500-$2,000
C. $2,000-$5,000
D. $5,000-$10,000
E. $10,000 or more

[Goofproof]

Gold is Gold, others fall short. XPAP works if you want it too, in 90% of patients, this doesn't count in patients that are unwilling to accept treatment and willing to be proactive in it's use. Jim

[Julie]

As I see it, you are someone who really has not (apparently) given Cpap a chance (if you're having trouble making it work, we'll be glad to help you), or else you're someone with something to sell and are trying to use us for marketing information. If it's the former, tell us about your Cpap experience, problems, etc. and see if we can help - there are loads of really good people here with really helpful and informed advice. If you're trying to 'use' the forum for profit somehow, please be straightforward and just say so, i.e. what your project really is and what you really are trying to achieve - the forum's for people to help each other, and on occasion, the odd person, student, etc. wanting tips for term papers, improvements in Cpap, but not for people who want to have a business, especially if it's not about Cpap, but some other type of device (and there are many, though none comes close to being as effective).

[donnafowler]

You do understand that there is more to it than feeling sleepy, right? In reading your questions, a reduction of 50% would not help too much in my case, because it would still leave me with severe apnea.

As for me, I am perfectly happy with my CPAP therapy. It works for me and I have no desire to try anything else.

[Joe50]

First, I think you need to give the CPAP a try.
Second, I would need some definitive proof that you are who you say you are before I give you any kind of information that might lead to an influx of unwanted CPAP pie in the sky spam from people that want to seperate me from what little money that I have left.
Just my one cents worth.

[WilsonVilleUSA]

I am a big fan of "Keep It Simple". CPAP is simple and more importantly it works.

Not invasive
Not chemical
Not cheap, but not unaffordable.

Masks have greatly improved over the short time I have been on it (almost 5 years) and my current mask (Swift FX) is almost like having nothing on. As another posted noted, a 50 or 75% reduction wouldn't be satisfactory to me as I consider CPAP 100% effective. I sleep well EVERY night having gone from an AHI of 114.4 to normally running less than one and never greater than two for the past 3 years plus.

CPAP has also greatly reduced sinus problems I have been plagued with since I was 17 years old. 2-3 time I year I would get sinusitis and half the time it would then develop into full blown bronchitis. I have only had sinus issues twice since I started CPAP and haven't had bronchitis at all.

As far as I am concerned, if it ain't broke don't fix it and CPAP (in my case) ain't broke.

[elena88]

I have severe OSA and a touch of CSA, and I have never "felt sleepy" in my life.

Sleepiness was never a problem for me.


I would not take a medication
I would not take an injection

a new surgical technique? Scar tissue? No, I sing.

Unless you can come up with a force field that can keep my airway open, I dont know how any "new" treatment is going to help me, personally,
but one never knows, if something comes along, and I can afford it, I will use it, IF it works better than my apap with no side effects..

[Roman Hokie]

An alternate with 50% efficacy? No thanks!

Was diagnosed about a month ago with OSA. First sleep study was about 7 hours of sleep with 90 AHI while on my back. Currently, I'm at 0.1 AHI while on my back. No brainer.

A bird in the hand is worth two in the bush. And I have a big friggin' bird in my hand. No thanks.

[Hawthorne]

Just for the record, there ARE other treatment options for sleep apnea besides cpap. When I was diagnosed, almost 8 years ago, 3 options were presented to me. I chose cpap since it was the most successful treatment and was non invasive.

There are surgeries available. Some are helpful - some are not.

There are dental devices available. Some are helpful- some are not.

Cpap is the gold standard because it works well for almost eveyone who gives it a reasonable try.

Finding a mask that works well for an individual and that they can feel comfortable wearing is the biggest problem. There are many types of masks available now - many more than there were several years ago. Some are very very minimal and do as good a job as a big bulky one in many cases. Even the bigger ones are much more comfortable than they used to be, if people need or prefer something other than the minimal nasal pillows.

You should do some research on cpap masks and sleep apnea in general and you will know then that there are already other options. So far, a better one than cpap has not been found.

[Wulfman]

Survey: how much do we want new treatment options?

What's this "WE" stuff?

I'm perfectly happy with my "Gold Standard" treatment and would not consider anything else.


Den

[amirgilead]

As I see it, you are someone who really has not (apparently) given Cpap a chance (if you're having trouble making it work, we'll be glad to help you), or else you're someone with something to sell and are trying to use us for marketing information. If it's the former, tell us about your Cpap experience, problems, etc. and see if we can help - there are loads of really good people here with really helpful and informed advice. If you're trying to 'use' the forum for profit somehow, please be straightforward and just say so, i.e. what your project really is and what you really are trying to achieve - the forum's for people to help each other, and on occasion, the odd person, student, etc. wanting tips for term papers, improvements in Cpap, but not for people who want to have a business, especially if it's not about Cpap, but some other type of device (and there are many, though none comes close to being as effective).

No, Julie, I haven't given CPAP a chance. Just the thought of sleeping with the whole tubing and masks thing looks... well... intimidating. I also have a close friend, that got diagnosed because of really loud snoring. But his (then) girlfriend preferred the snoring over the noise from the CPAP machine he had. So, if you have any tips - fire away!

The whole experience got me thinking about this survey, which, if successful (big if) can be turned into a paper or something like that. It can be a learning experience, whatever the responses are... commercial? way over my head...

[amirgilead]

I have severe OSA and a touch of CSA, and I have never "felt sleepy" in my life.

Sleepiness was never a problem for me.


I would not take a medication
I would not take an injection

a new surgical technique? Scar tissue? No, I sing.

Unless you can come up with a force field that can keep my airway open, I dont know how any "new" treatment is going to help me, personally,
but one never knows, if something comes along, and I can afford it, I will use it, IF it works better than my apap with no side effects..

Sleepiness is the symptom that got me diagnosed. So I used sleepiness as my example.

"Force field" is exactly what I was thinking when they told me I need a CPAP. And then I though it would cost me a whole bunch of $$$. For now, I would pay as much as I can (do they have student discounts?) for a "force field"... By the way, personally, I would go with medication and injection, but no surgery.

[Hawthorne]

In the meantime, I suggest you get busy and get a cpap machine and mask and work at using it. Anyone diagnosed with sleep apnea and not treating is risking a lot - high blood pressure leading to stroke or heart attack and the results of that.

Once you are treating your sleep apnea, you will be better able to proceed with any further research for future treatment you may wish to pursue but, for the sake of your life, get going on cpap. It is really not that bad. The machines are not really very noisy at all. When you get going with successful therapy you will feel so much better! Soon getting your mask on and using the machine will be as automatic as brushing your teeth at bedtime.

When you are using cpap then come here with any questions you have. There are a lot people here able and willing to help you get the best from cpap. You need to try it first to see what you need to ask.

A little research here will tell you which machines to look at if you want good therapy and quietness. Lots of experience with various masks here too!

There are ways to handle the expense, if you don't have insurance. If you do, you are probably good to go. Get the prescription and go from there. Also, make sure you get a copy of your sleep study and prescription in your hands so that you have both those documents for future use.

[Wulfman]

Do you have any CPAP equipment yet?
If so, list it in your profile......along with your prescribed pressure if you've had your sleep study.

"Snoring" is only one symptom of OSA. Your friend, whose girlfriend talked him out of using it, is an idiot.
OSA WILL KILL YOU. It does it slowly and brings on other insidious medical problems. If you're really a medical school student, that means you SHOULD know all of this and makes your denial even worse.


Den

[topdragster]

[ququote="amirgilead"]No, Julie, I haven't given CPAP a chance. Just the thought of sleeping with the whole tubing and masks thing looks... well... intimidating. I also have a close friend, that got diagnosed because of really loud snoring. But his (then) girlfriend preferred the snoring over the noise from the CPAP machine he had. So, if you have any tips - fire away!

The whole experience got me thinking about this survey, which, if successful (big if) can be turned into a paper or something like that. It can be a learning experience, whatever the responses are... commercial? way over my head...[/quote]


amirgilead it may look intimidating but look at the adverse health affects of not having it. Your close friend must have an old cpap or a very loud one. The S9 is the quietest on the market so far and in my case my wife uses a white noise machine too so the "crickets" are louder than the cpap unless I get a "wheezer" (mask leak). To me the cpap has to be the closest to natural remidy than the other alternatives of surgery. I wonder what the long term affects of an appliance would be on the teeth? Is it a possibility one would have to get braces after using an appliance for long term? I have only just begun my journey with the spiral wound hose and I am not prepared to look at anything that would only give me 50% when I already have 100%. You need to get past the image thing and give cpap a chance, your health will thank you for it.