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Active member
Jan 18, 2016
The Villages
Hello all. I'm currently using non-invasive Trilogy and Cough Assist devices, and I'm scheduled for PEG surgery on August 9. At my PEG consult yeterday, the doctor asked me if I had heard of diaphragm pacing system that's sometimes considered as non-invasive devices become less effective. My understanding is this would stimulate the diaphragm and possibly delay invasive ventilation. I checked into it a bit online, and even though it was approved by the FDA in 2011, the results for ALS patients have been mixed. Has anyone had any experience with this system?:?
Hi Billybob, I have indirect experience. A good friend who I know through ALSA get togethers here, his wife got one of the first. She is doing incredible. She was dx in 2009 I believe. She’s still up and about in her wheelchair and enjoying life. However, we all know that everyone progresses differently, but as far a as I know she doesn’t use a bipap, just the pacer.

I’m happy to her your Dr. mentioned it as I thought they were no longer available.

Hope that helps.
The clinic I attend, Forbes Norris ALS/MDA in SF, was part of a trial to put these in place. I believe the stopped offering them, as part of the trial, they didn't feel that worked well enough to go through the process. I said no and they did ask about it again.
The initial belief that lots of PALS would benefit did not pan out. It is still under research, but the mfr is now required to point out that the efficacy for this use has not been proven. Because some PALS seemed to progress more rapidly with it, and some major clinicians have stopped using it, it has fallen out of favor. I would research very carefully and consult multiple experts who have reviewed all the trial data, before considering it.

The device's inventor has pointed out that the original trials leading to approval studied a different PALS population than later trials. His recommendation was/is that diaphragm fluoroscopy and phrenic nerve conduction studies be "used to identify patients who have intact phrenic lower motor neurons but lack upper motor neuron control (either brainstem or cerebral cortex)." This is the group that the DPS was designed to benefit.
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The people I knew who got it have all died. Except for one who vented. I don’t know if they did better or worse than they would have without but the controlled study as Laurie and Waldo noted was not positive.

Even before the study came out my sister’s ALS pulmonologist was against it as was the ALS specialist from another institution that I asked. What is the specialty of the person who brought it up?
I was on the pacer for about 2 years. I only used it for a couple of hours a day. My diaphragm continued to weaken. When my FVC hit 20% I decided to cut the wires and get vented, that was last January. When I got the pacer, it was hoped it give me 18 more months before I would need to be vented. Personally I think it worked. I was also part of a 10 patient study. Only 2 people made it past 18 months, I was one of them. My hospital decided not to do them anymore. The study showed no clinical benefit. In all total 10 hospitals were involved in the study, all with the same conclusions

It isn't used in Canada due to no improvement or faster decline in diaphragm function. On the surface it sounds great, however it seems to tax the phrenic nerve. The longer the phrenic nerve stays intact, the longer you live.
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