CPAPtalk.com

brazospearl wrote:Sounds like we need a survey choice for "when the data indicates a substantial change is needed." Seriously, why bother if the data shows things are going well? What would we learn from a new study? If things aren't going well it's another matter entirely, and there's no time frame appropriate for that. Just sayin'.
Brazospearl

Those are good points. The portion I put in bold triggered another thought. From some folks who have shared their journeys on the forum, it was apparent that the reasons they had additional studies.....even after they had data-capable machine......is that many of their original sleep studies were probably flawed. The ones I'm thinking of were started out on non-data-capable CPAP machines......then got data-capable Autos......then went to Bi-Levels/Bi-PAPs (and/or more specialized ASV-type machines) before they finally received decent therapy.
These pages are filled with stories of flawed sleep studies.......doctors who are unwilling to prescribe data-capable machines.......and DMEs who are pulling every under-handed trick to get out of handing them out
After several years of reading these stories, it really makes a person sick to their stomach and mad as Hell about the state of this portion of the "health-care" industry. And......then there are the manufacturers......who are trying to protect their "customer base". Hint.....it ain't us, the end-users.


Den

dave21 wrote: How often do you think you should have a new sleep study?

You didn't provide the answer that I would have given to this question, so I chose "never".

I suspect most of us have very little need for periodic sleep studies because little changes in our need for therapy. The minor changes that do occur can easily be monitored through use of an auto-pap.

However, I do agree that there may be circumstances that would warrant a new sleep study. These are best determined on a case by case basis by one's sleep doctor. Thus, my preferred answer would be "... as needed and as determined by one's sleep doctor ..."

Agree that with a data capable machine and the software to adequately analyze the data you shouldn't need a sleep study repeat for at least 5 years, if then. I'm one that used to obsess over "the numbers", but after a year of "No Change", feeling good, and the numbers being good I don't worry about the numbers anymore. If something happens and I feel "strange", well stranger than normal, or there's some kind of change I'll look at the data to see what's up, but as long as I'm feeling good, sleeping well with adequate energy, I'm not going to worry about it. Do I need another sleep study.....For what???? They didn't do the titration right to begin with, so why should I give them another opportunity to mess it up again??? My auto and understanding of the numbers set me up not the sleep center. ( I was titrated at 5cm....I can't breathe at 5cm!!!! I'm presently at a range of 11-15 and rarely ever get over 13 and I'm feeling good with a 2.5 year average AHI of 2.1......I'm a happy camper!!!)

Den's absolutely correct!!! Ain't no such thing as a free lunch!!!! It may be free for you, but your neighbor is paying for it somewhere down the line....
As for getting supplies, I get mine every 3 months, whether I need them or not and have a good supply of spares for when I don't call every three months. Thankfully my insurance covers it 100%, but the insurance ain't free, so I may not be paying full tilt boogie, I'm still buying!!!

just my couple cents....
cheers
goose

Wulfman wrote:... There ain't no "free lunch" (or sleep study or healthcare). SOMEBODY is paying for it. The more people who take advantage of it, the more it costs everyone else. ...

Until you note the costs of UNTREATED sleep apnea. So, one approach is to do the testing every year ... or ...

Wulfman wrote:... Assuming there are no other serious complications that present themselves (Central Apneas or other heart/lung/brain related disorders), with a data-capable machine and the software, a person with "garden variety" Obstructive Sleep Apnea should never have to have another sleep study. ...

You monitor your own therapy. I don't have to go to the doctor every day to have my blood glucose levels monitored. I could do that. But THAT costs more than is reasonable. Instead we confirm my own monitoring with an A1c test every few months. And just like sleep apnea, unmanaged blood glucose costs MORE if we don't manage it.

So, yes. I agree that if we monitor and manage our sleep and have no additional problems, then further sleep studies are not needed ... until something changes. And then hopefully the machine will help you find those changes in the number BEFORE it becomes a problem.

I agree John, ultimately we should be able to monitor our own conditions and work along side the sleep doctor, providing results and having them confirm / make changes where necessary, the medical profession shouldn't be worried or concerned about this. I think this would probably be the lower cost to our insurance companies, medical profession and national health service.

The problem is on one side of the coin the medical profession is on the cutting edge of technology and on the other side they seem to still be in the ice age when it comes to working with patients and giving patients access to the data. Until that happens, I think the cost of untreated Sleep Apnea is although unknown it's probably in the billions of dollars and it would be cheaper to diagnose and check on a regular basis. There seems to be a lot of newbies that join the forums here that say they can't hack the treatment but don't likewise go back to the doctor, that really scares me on the amount of people that fail compliance and don't let anyone know.

Before I ever found the forum here ResMed gave me access to the Clinicians settings on the machine as they could see that the hospital hadn't set the machine up correctly and weren't monitoring it.

In fact, 4 years on I'm still talking with ResMed and I sent more data off to them in the name of research both for the S8 and S9 only a couple of weeks ago so they can see in a real patients condition what the difference of treatment is between the S8 and S9.

I had bad experience with sleep studies that I don't trust them. Too many places and people inexperienced, I understand not everybody is but I don't want to take any chances.

I rather buy a Auto machine and see if I need a change and consult with my doctor. I won't go back to a sleep study again.

BlackSpinner wrote:Why waste money on sleep study when you are feeling fine and your data is with in the appropriate range?
If you have fully data capable machine it will give you all the needed data, all the doctor could do is lend you an oxymeter to make sure your O2 levels stay good, but if they didn't you would feel crappy anyway.

I agree.

fidelfs wrote:... I had bad experience with sleep studies that I don't trust them. Too many places and people inexperienced, I understand not everybody is but I don't want to take any chances. ...

Remember, there is never one size that fits all.

Rather than throw out the baby with the bath water, we should be more insistent that sleep labs meet certain criteria. There a lots of problems that an auto unit simply will NOT address. Someone with RLS or PLM will have no idea that's their problem if they only have a APAP unit. Someone with central sleep apnea may have a clue they have problems but not really why or what to do about it.

Just becuase you have a hammer does not mean the rest of the world is made of nails!

I would rather work in conjunction with a reliable sleep lab. They can help document what's going on with my sleep. My doctor, working with me, can set priorities to address. And I can monitor my ongoing progress to see if it's addressing all the issues. Sure, I use a data capable unit. It helps GUIDE the process, but can not replace the sleep study.

Just my two cents ... from someone who needs more than just a hammer!

I'm really glad I started this thread because although most of the time we all tend to agree here on CPAPTALK, e.g. we don't get enough help from our doctors, there seems to almost be two camps forming.

1. The camp where people had a bad / negative experience and don't want to go there again
2. The camp where people would like the opportunity to work with Sleep Clinics / Doctors to improve them

Personally although I had a bad experience, a year or two ago I would have probably fallen into (1) but since reading up and educating myself more I feel I fall into (2).

Likewise although the Sleep Study isn't that pleasurable because you're in a foreign environment, hooked up to a lot of machines, you probably won't sleep as well either, sleep studies are an important process in diagnosis of Sleep Apnea for most of us.

I think the important thing here is that if Sleep Clinics / Doctors are providing bad experiences for us then we need to let them know so we can try to help to improve them.

Thanks
Dave

No one has yet explained just how re-testing people already diagnosed with OSA will improve anything?

People who have been diagnosed, compliant, and not having any other complaints filling the beds will ONLY prevent any newcomers from being properly diagnosed.

Isn't the definition of Insanity doing the same thing over and over but expecting different results?

Maybe requiring testing for anyone who operates a motor vehicle, airplane, or other conveyance would see an improvement?

GumbyCT wrote:No one has yet explained just how re-testing people already diagnosed with OSA will improve anything?

People who have been diagnosed, compliant, and not having any other complaints filling the beds will ONLY prevent any newcomers from being properly diagnosed.

Isn't the definition of Insanity doing the same thing over and over but expecting different results?

Maybe requiring testing for anyone who operates a motor vehicle, airplane, or other conveyance would see an improvement?

It would be improving the income for the medical professionals. That's one reason why the doctors don't want to prescribe and the DMEs keep giving out the non-data-capable machines. I also think the manufacturers are to blame, too, for making those machines.
How many people with diabetes would purchase a glucose meter that didn't give a reading (or that could only be read by a doctor's or DME's office)?


Den

GumbyCT wrote:No one has yet explained just how re-testing people already diagnosed with OSA will improve anything?

People who have been diagnosed, compliant, and not having any other complaints filling the beds will ONLY prevent any newcomers from being properly diagnosed.

Isn't the definition of Insanity doing the same thing over and over but expecting different results?

Maybe requiring testing for anyone who operates a motor vehicle, airplane, or other conveyance would see an improvement?

I think your OSA can improve or get worse during your life time. You can gain/loose weight, age does not help OSA either, etc.

Like I said before this is my personal opinion, I won't get back to a sleep study but it is good idea for some one who feels better taking one. I will rely more in symptoms and an auto machine.

GumbyCT wrote:No one has yet explained just how re-testing people already diagnosed with OSA will improve anything?

People who have been diagnosed, compliant, and not having any other complaints filling the beds will ONLY prevent any newcomers from being properly diagnosed.

Isn't the definition of Insanity doing the same thing over and over but expecting different results?

Maybe requiring testing for anyone who operates a motor vehicle, airplane, or other conveyance would see an improvement?

My sleep doctor told me I could raise my pressure (or get it raised by the DME) to the titrated level and monitor my process or I could stay at the lower level at which I was comfortable and ignore everything but then I had to come back in for a test (done at home) in 6 months. I chose the self control route. I can see that some people, and I am thinking of my mother with dementia, would not be able to monitor or even complain about how they felt. They would need to be tested regularly.

I never had a sleep study. My doctor, who knows absolutely nothing about apneas, must have went to a seminar, and now sends suspected cases directly to a RT, who sends you home with an O2 meter for the night. Based on that alone, the RT said I needed APAP therapy, and here I am. She wanted $2700 for a machine and mask, and I had no extended insurance, so I bought off the net, got some software, and here I am. With no sleep study, but able to see how my therapy is going.

There have been so many negative comments about sleep studies, I just wanted to add my experience. At my sleep study, I was able to talk to the technician who was very knowledgeable and although he was not allowed to answer certain questions, he did help me understand the process and CPAPs in general and even a little bit about OSA. My only complaint about the sleep study was that I never talked to the sleep doctor. The sleep doctor looked at the data after I left (I think it was after, but I'm not 100% certain), make up a report and sent it to my doctor who sent it off to a DME.

And they did the titration correctly, they found the lowest pressure that gave me an effective treatment and the correct style mask that works for me.

-Corey