Treatment in Canada

[SenatorBirch]

Hi there. First post for me.  I've read the forum rules, so please be patient and let me know if I've broken any!  It wasn't deliberate.


I'm looking for information for Canada.

1. Is there a registry somewhere of all registered sleep doctors, clinics, etc in Canada? (The Canadian Sleep Society has a "Provider Map", but it's been under construction forever and it shows only about three locations.  Obviously there are more than that, since there are multiple "sleep doctors" just within my own home town.
   
   
2. Can anyone recommend from personal experience, a doctor or clinic in Canada who has successfully treated UARS (Upper Airway Resistance Syndrome)?  I mean someone who will accept and recognize it as a separate condition, and will acknowledge the importance of RERAs (Respiratory Effort Related Arousals).
   
   
   

Obviously you may prefer to respond with a private message, and again, sorry if this violates any rules.

Thanks

[pholynyk]

Unfortunately, every province makes their own rules for the provision of CPAP machines, so there is no national registry.

In Ontario, the Assistive Devices Program will pay a good portion of the cost - if it is prescribed by a registered doctor. You can email them at adp@ontario.ca for a list of registered clinics in your area.

In other provinces, I would expect you would have to write to the Ministry of Health to see if they can help you.

[SenatorBirch]

Hey there - thanks for the quick response.

Just to clarify though .. I have a machine - actually two (CPAP and ASV).

My question has to do with DOCTORS.  My family member has been battling this for about eight years (not counting the time BEFORE diagnosis), and he is MUCH worse now than before he went on the machine.  We don't believe that his doctor will be able to help him (he hasn't in eight years), and we believe the main problem is that he sees this as "mild sleep apnea", (the original diagnosis was UARS).  Unless a doctor is willing to treat this as a different beast (UARS, not Sleep Apnea), then there will be no solution.

So I am looking at somewhere to go (preferably in Canada, but US if necessary) to get someone to take this seriously.  Because of other complicating issues, this person's life is on the line.

Thanks again.

[Cpapian]

We can probably help you better if you let us know your province.

Dr. Stephen Parks is one of the UARS gurus. Last time I looked at his website he was taking online consultations. IIRC he was expensive maybe 500 or 1,000 USD. But it was a couple of years ago.

[Howardoo]

I'm in Ontario and I've had to go to the U.S. for help with my Central Apnea. 

Your best bet would be to cross reference doctors who have done research on the subject and select the ones in Canada. There may be zero though. Take a look at recent sleep conferences online, they will list the speakers and there home country. You may find one there. It's a huge amount of digging to find a good sleep doc in Canada. A lot, and I mean a lot are horrible.

[DaveL]

Cpapian thanks so much for your response.

I spent a lot of time looking for a sleep doc. I even looked at ratemkdoc.com or whatever it was. I found my retired sleep-doc-from-*ell there. The reports were interesting.

So I shudder trying to think about finding a sleep doc here. I wish you good luck.

When I wanted a new machine about a year and a half ago I saw Dr Awad in Oakville. He was far far better than Dr Inouye. The SDFH.

Finally you need a referral in Ontario to a sleep doc. Again. I wish you good luck. My family doc was a quack. He referred me to Inouye who had similar skill and worse manners.

[SenatorBirch]

Hello Cpapapian

Thanks so much for the response.  I know of Dr Park and the fact that he does remote consultations.  It is definitely something I am considering (actually for a family member, not myself).  I've read a lot of his stuff from his website and it definitely appears that he takes this (UARS, RERAs) seriously and sees it as distinct from OSA.  (I'd love to hear about anyone's firsthand experience with Dr. Park, btw)

I am in St. John's Newfoundland, which I didn't mention because I am open to travelling anywhere in Canada if I believe it will provide a solution, so I didn't want to limit anyone's suggestions in any way.  (same with the US, though costs are obviously another issue).  Our original diagnosis was in fact in Ottawa in 2014, but the doctor is now retired, for all intents and purposes.  He (his sleep tech) carefully monitored and reported RERAs, and diagnosed the problem as UARS.  I need someone like that.  It seems too many doctors and techs believe that RERAs don't matter.  I'd bet my life they do.  What I know with 100% certainty is that this person is still very sick, dangerously so, and even worse that at the time of original diagnosis.

And that's why I'm looking around for another doctor.  But I can't afford to waste time and money going to a doctor with the same blinders as the one we currently have.  (doesn't seem to worry about RERAs).  I need to be 100% sure.  I actually managed to get a "second opinion" referral here in Newfoundland later this year, and while I'm hopeful, I have no idea if he will have those same blinders.

So anyway ... if you or anyone knows of a doctor, preferably in Canada, who you can confidently saywill treat UARS and RERAs (as Dr. Park claims to do), PLEASE let me know.

Thanks again for taking the time to answer.

---

Thanks Dave, though of course this is distressing to hear.

I do find it hard to believe - and also frustrating - that there is no comprehensive directory or registry of sleep doctors and sleep labs in Canada.  It was my intent to get a list, and write every one of them asking if they would actually consider/treat UARS / RERAs.  I may still do that, but will have to create the list myself.  Much of the info is out there, just makes the process slower.

[Sleeprider]

rcashin, is your relative using CPAP now? If it is one the machines that provides data, we can help you to interpret the information to decide how to optimize therapy. People diagnosed with UARS often need pressure support to ease the flow limitations and arousals that come from them. The OSCAR software is free and gives more details than any doctor will be aware of. What machine is being used?

[Gideon]

If at all possible use OSCAR to look at the detailed data. actually post it here on ApneaBoard.  MANY here are familiar with RERAs and UARS, likely far more than the typical doctor.
We can help dial in the settings for better treatment.

[SenatorBirch]

Thanks.  This confirms what I've heard for some time.