Clinic visit: Your thoughts on Diaphragm Pacer?

[Moe01]

Hi folks,

My husband and I saw our Neurologist and Resperologist on Tuesday, and asked them about getting a Diaphragm Pacer. They both discouraged us from getting it, as they don't think it helps much, and just helps to delay the bipap.

As my husband is already on the bipap, they don't think it will do much for him. Has any one got a Pacer that they can share their experience with us?

My husbands FVC in November was 51%, however, his breathing was so bad on Tuesday this week, that they didn't even bother to do the tests, just advised us to use the bipap more and more, and enjoy the rest of his time with the family. Also, discouraged us from the Vent.

Your feedback would be much appreciated.

 

[tomby]

I pursued the pacer and was already on bipap. The benefit I was looking for was not delaying the bipap, but delaying a trache/vent. If you are considering trachea/vent, anything that will delay it is worth looking at. My neuros opinion was there was minimal downside, so go for it. Unfortunately, I wasn't a candidate.

 

[MuonOne]

Moe01,
It might not be easy to obtain one even if you qualified in the medical sense. The fda, as far as I know, has not approved use of the device in ALS. You might be able to obtain assessment of whether you would qualify if the device becomes available for persons with ALS. You might thereby be as nearly ready as possible, were the device to become available. The lead research organization related to the device has reported that one can obtain the device through EU protocols and others have suggested it is thereby available, in France.