diaphragm pacer

[penney21]

HI EVERYONE.
MY BROTHER WAS DX IN OCT. 2012 WITH BULBAR ONSET ALS. HIS BREATHING HAS GONE DOWN,I WAS WONDERING IF ANYONE HAD THE DIAPHRAGM PACER INSERTED.HOW ARE YOU DOING WITH IT/was your breathing low at the time of surgery? what is the whole process of testing like?DO YOU THINK IT IS WORTH IT?PLEASE WRITE BACK ,I;M TRYING TO HELP MY BROTHER.ALSO WE LIVE ON THE EAST COAST.WHERE WOULD YOU SUGGEST WE GO FOR THIS?THANK YOU

PENNEY21

 

[trfogey]

October 2012 hasn't gotten here yet, so I'll assume that you meant 2011. There are two members here (that I know of) that have undergone the DPS implant. I sent them messages so they can find your thread.

One thing that will be useful for them would be your brother's latest FVC test result. That is a breathing test that ALS clinics usually do every visit.

Good luck to all your family, especially your brother. Thanks for doing this research on his behalf.

 

[tmasters]

I posted a thread on the "People with ALS" forum detailing my experiences.

My Story of the Diaphragm Pacing System Implant

You can also use the search feature, or look at the threads listed at the bottom of this page.

-Tom

 

[sadiemae]

Read this recent thread

https://www.alsforums.com/forum/people-als-pals/18745-my-story-diaphragm-pacing-system-implant.html

 

[MuonOne]

There are not many places performing the surgery at the present time, but certainly Cleveland, OH University Hospitals has. I would suggest you contact your regional ALS center. All patient comments I have found are from neutral to favorable . . . no one known offering regrets. I know of about thirty-five cases, none personally. Maybe about three hundred have tried.