Sleep Doctors. Any Success Stories?

[ShelaghDB]

I am beginning to think one should ONLY either interview sleep doctors ahead of time and go with the one that suffers from Sleep Apnea himself so he or she has at least an understanding of it OR.........


Perhaps this forum needs a sticky thread of some sort where every city can have at least ONE GREAT sleep doctor to recommend if everyone participates and can give a name and number for a great doctor.

I know if someone could turn me on to the GREAT sleep doctor in Toronto IF one exists, I would run off and see him............imagine how great it would be if we had a recommended list here to look through

[SleepyToo2]

Good luck with finding one. I did a google search and found several web sites with rankings. I picked one and found 3 within 10 miles, but none of them was the one I go to ...

[JQLewis]

I had my appointment with the sleep doc yesterday, and I'm a bit more optimistic, but only a bit. To say the least, a lot of questions/problems remain. He indicated a willingness to try to get me a better machine by sending a letter of medical necessity along with the script. He said perhaps a Bi-PAP would be the best choice, but he seemed unaware of the capabilities of the machine I have. My DME is coming by this Monday to pick up my compliance data. He said he would call them and get the data about leaks, etc. I explained it was a Resmed Escape and provided no leak data, but he said he'd call the DME and see what they said.

He also outlined one alternative approach, to combine an oral appliance with the Escape I have at a lower pressure setting to alleviate my aerophagia. This does not seem like my best option. He clearly understands the value of data, so I suspect he'll be OK with my getting a better machine on my own, but we tabled that discussion until it becomes necessary. I still don't know what my approach will be if the initial request and appeal are denied. I might have to accept the purchase so that I will at least have a humidifier and then buy an S9 Autoset or Elite to go along with it. At least this way I would retain my right to supplies: new masks filters, tubes. My other option is to drop my insurance company and try starting from scratch, but that would almost certainly result in a gap in my treatment. Who knows for how long?

So my next step is to request an extension of my cpap rental period, and then wait for my new sleep doc to make his move. Based on my prior experience it will take up to three weeks to get a decision from my insurance company once the doctor submits his request.

[cuyahogaguy]

I've never had a sleepdoc that I considered even "competent" ----taking into account analyzing and correcting actual problems, using experience to maximize treatment, empathy, articulate communication, options, encouragement to become a knowledgeable consumer, or optimum equipment.

I would guess that they are more concerned about money and insurance issues than elite care and that they dont want you to know more than they do about your own treatment----so if they spend 5 minutes with you then unless you get lucky your level of care will be very poor or even dangerous in the long term.

As harsh as this sounds, they are probably even more greedy and incompetent than described.

[swankgirl]

My doctor explained everything to me thoroughly and told me to look up on-line how to access the secret menu (but I didn't need to because the DME left the secret instructions in the package). The prescription form he uses lists all the possible machines and masks and it doesn't include any bricks.

I think i just received the same machine past week...... RemStar Pro 60 series, straight PCAP [no option for auto].
Where might I find more information on the "secret instructions and secret menu"??
Thx!

[Jay Aitchsee]

JQ, it took me 5 tries before I found a certified sleep doctor that was interested in reviewing my data, then I found one who was interested in everything, Zeo included, and was happy to have a patient who wanted to take part in their own therapy. This search took about 5 years. Along the way, I learned all I could about sleep apnea and treatment, bought a used APAP out of pocket and used it to self titrate an effective pressure range.
My suggestions are for you do to similarly. Keep searching until you find a Doctor who wants to work with you to resolve your sleep issues and treats your knowledge with respect. Find a way to get a data capable machine, even if you have to pay out of pocket. Used S9s should be getting pretty cheap now. Learn all you can about the data available and share it with your Doctor. Use software to produce reports the Doctor understands, ResScan or Encore. SleepyHead is great, but most doctors aren't familiar with it. Use this forum as a resource.
Good luck and hang in there.
Jay

[JQLewis]

JQ, it took me 5 tries before I found a certified sleep doctor that was interested in reviewing my data, then I found one who was interested in everything, Zeo included, and was happy to have a patient who wanted to take part in their own therapy. This search took about 5 years. Along the way, I learned all I could about sleep apnea and treatment, bought a used APAP out of pocket and used it to self titrate an effective pressure range.
My suggestions are for you do to similarly. Keep searching until you find a Doctor who wants to work with you to resolve your sleep issues and treats your knowledge with respect. Find a way to get a data capable machine, even if you have to pay out of pocket. Used S9s should be getting pretty cheap now. Learn all you can about the data available and share it with your Doctor. Use software to produce reports the Doctor understands, ResScan or Encore. SleepyHead is great, but most doctors aren't familiar with it. Use this forum as a resource.
Good luck and hang in there.
Jay

Thanks. I may have succeeded in getting a decent doctor and a decent machine, but it is still a bit up in the air. I'll see in the next week or so, I hope.

I appreciate the wisdom of your advice, but it's a rather remarkable indictment of the current system that you had to go through so much to get decent medical care. I recently read a post at Dr. Steven Parks website which mentioned that there are 77, often overlapping, medical conditions which can contribute to a person's sleep disorder. While I certainly think patient's should be well informed about their conditions and involved in their own treatment, it's impossible for most people to cope with the complexities of diagnosis on their own. The figures pertaining to people with undiagnosed sleep disorders and the failure rate of the diagnosed who seek responsible treatment for their conditions are astonishing. Despite the problems I've encountered, I'm actually one of the lucky ones.