Diaphram Pacing System

[Janie H]

My family is pushing for this since my breathing has gotten worse, does anyone have this or information about it? I feel that I should wait until I get really bad, I have a trilogy, cough assist and vest. at rest I am OK, a walk across the room gets me out of breath. I read a article that stated that people lived around 16 months after the surgery. I plan on staying a little longer than that, LOL

 

[Nikki J]

There is cutoff after which you are ineligible. You need enough diaphragm to benefit so if you want it get evaluated soon. Tmasters has an excellent old thread about this. Well worth a read. Think he pops in still but believe it is a challenge for him to post good luck

 

[affected]

I'm really not very knowledgable about this but I believe, you need to still have some nerve impulse working to the diaphragm for the pacer to work with?

Someone please correct me if this is not true?

 

[Jeff Long]

My family is pushing for this since my breathing has gotten worse, does anyone have this or information about it? I feel that I should wait until I get really bad, I have a trilogy, cough assist and vest. at rest I am OK, a walk across the room gets me out of breath. I read a article that stated that people lived around 16 months after the surgery. I plan on staying a little longer than that, LOL

Janie,
I believe the estimate is that the DPS can extend a PALS's life by 16 months, not that you're good for 16 months after the surgery!
I had mine placed in June 2013 and it's been an easy adaptation. First clinic appointment after that my respiratory numbers were up from the previous visit. I don't 'pace' overnight (I am supposed to get there!) but get about 5-6 hours a day. It's painless, not intrusive and if it gives me even part of those 16 months, well, I take 'em!

Pre-op testing includes an EMG to make sure the phrenic nerve still works enough to be stimulated, and there are some respiratory parameters as well. Can't be too bad or too good, so it's important to work with your medical team to make sure you're 'in the window.'
Jeff

 

[patrick123]

Jeff was pretty point on. I got my DPS last sept. I pace for about 4 hours a day. Not overnight yet. As Jeff stated the window to get a DPS is very small. Your phrenic nerve in the diaphragm needs to be active and your FVC needs to be above 50% mine was at 68%. You will need an EMG, sniff x-Ray, and FVC test. The more you wait the les chance you have of getting one. And not every hosp. Is qualified in the procedure. As I stated I got mine last sept. At the University of Colorado medical center and I was the first patient to get it.

 

[Santa joe]

Janie everyone's responses are so true. Look into the pacemaker sooner than later. My pals and I went to the Mayo in Florida with such high hopes. Unfortunately, he did not qualify. Get moving on this one girl.

Debbie

 

[FSHolbrook]

I have had ALS for about 9 months and my neurologist said that I should make arrangements for be screened for a DPS ASAP. There are some studies going on about how effective the DPS. I would get right on it.

Rick