Are any Canadians using the diaphragm pacer?

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John1

Very helpful member
Joined
Feb 25, 2006
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1,055
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
I am at the point that my FVC (70%) is approaching minimum levels for implanting the diaphragm pacer (50%?). I have been following Dr. Onder's research from the outset. I know that the device was being trialed in BC a few years ago for ALS but don't know the outcome. Are any Canadians using the device or does anyone know whether it is covered under Canadian Health Insurance?

John
 
Hi John,

My pulmo told me that there's one fella in NB - but not a PALS, and he is doing well. I wrote to Dr. taylor at ALS Canada regarding DP study in BC and he didn't know outcome; he evidently was not inclined to follow up on our behalf. (although he did provide contact information in Cleveland which I will pm you) While my neuro is not especially keen on it, my pulmo said he would absolutely support me in my efforts to go that route. He has been following DP very closely and knows Dr. Onders.

We are still weighing options, it's not only a financial consideration, but ensuring that we can be adequately supported and "tweeked" as required. I know many PALS who have had it done and who are happy with results. Let me know if you want to speak with any one of them.

I read there is great optimism that soon the pacer would be wholly inserted with no exterior wiring - much like a heart pacer or internal defibrillator which can be adjusted remotely.

Maybe we can compare notes as we research?
 
To my understanding the Canadian health care system does not support the DPS. Most pals who have it got it in the US. I had my DPS put in on sept. 25
 
Hi Elaine,

Very helpful, thank you. Puzzling that Dr. Taylor hasn't looked into this further since it sounds like one of the very few areas in ALS research that technology may really help us extend enjoyable life. I should prod him on it too.

The news that the device might become totally enclosed is especially welcome. Could you give me the reference on this?

John
 
Hi Patrick,

I think it was one of your earlier posts that first made me aware that it might not be available in Canada. You have had the DPS now for about 6 weeks. Can you tell us about your results to date and whether it has eased your breathing at all?
 
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