Diaphragm Pacing System

[Buddha Nature]

Hello everyone!
I am wondering if anyone has had experience with Diaphragm Pacing System -
My partner was diagnosed just over a year ago with Bulbar ALS - he has peg tube now and is on Bi-Pap.....the doctors are considering venting him soon though he is doing well! Any thoughts or ideas? Thank you so much!

 

[sadiemae]

There is at least one forum member that is on it, let me research to find out who. HUGS Lori

 

[CRF8]

my wife got hers in Atlanta after a lot of research in Oct 2009, we love it...see my posts on PLM

 

[Buddha Nature]

Thank you so much - I am hopeful that our specialists will look at the DPS as an option for my partner - he is doing very well with the Bi-Pap!
Thank you Lori and CFR8
Hugs to you :-o

 

[CRF8]

I suggest you DO NOT rely on your doctors to help you with the DPS decision. Take the initiative to push the issue with them.

 

[marywest45]

To CRF8:
Thank you for your post on pacing device.. Please suggest at what point to start this discussion with doctors... certain threshold for FVC or MEP and MIP?
Thank you. Mary

 

[pmbenb83]

Eric's doc at UVA did not recommend it when we asked about it. This was something that Eric was willing to do instead of venting. I will definitely bring this up again, now that we have heard of someone having good results from it.

 

[Miss]

I would also like to hear when you need to start thinking about the DPS. It sounds like an option my husband might consider. Last time we talked about it - no vent.

 

[ZenArcher]

I can't find the study now but DPS has been shown to slow the decline of FVC. If that is true I would think earlier is better. The issue is DPS is not an "approved" treatment for ALS yet. This means most if not all insurance policies won't cover it and it isn't cheap.

 

[Miss]

What will it take to get it approved?

 

[ZenArcher]

There are studies in progress. If they show that it works it will most likely get approval but I have no idea when that will be. By coincidence I had sent an email earlier today before I saw this thread asking the VA if they would consider doing it regardless. I haven't heard back yet and I imagine it will be on a hospital and case by case basis. Once you get in the system find out who you should deal with in pulmonology and ask the question. The worst they can do is say no.

 

[sadiemae]

Going to VA for Pulmo visit tomorrow, hope I can get us answers. HUGS Lori

 

[Miss]

Keep us posted!

 

[CRF8]

you have to be able to pass a "sniff test" in order to be eligiable for the DPS. It checks that your diaphram is still able to be stimulated. we did one local & had to repeat at Atlnata hospital the day prior to DPS install. You stand by a screen and they view diaphragm while you inhale (sniff) sharply through your nose.

My wife hates the bi-pap masks and rarely wears it, yet her OX & CO2 numbers are decent.
If you can afford it out of pocket you need to do it ASAP.
I had to literally harrass my wifes Pulm doctor to get him involved. Your current test results need to be viewed by the DPS doc as well.

If you wait for your doctors to set you up with this, we will all be long gone. Take the initiative.
I have a string & photos on PLM about this with a time line.....

you have 2, and only 2, choices for this procedure at this time, Atlanta & Paris

 

[Miss]

CRF8,

Did your insurance company pay for any of it? What sort of out of pocket are we talking about? We live in Memphis, so Atlanta would be no big deal for us. We grew up with our pulmonologist, so no problem there either.