Diaphragm pacer update
 

The possibility of electrically stimulating the phrenic nerve or the diaphragm to prolong unassisted breathing caused a bit of a stir on the old Braintalk. Unfortunately all the discussions of it are now gone. I've heard little more for some time now so am delighted to see that Dr. Onders and Dr. Rosenfeld both will be presenting on the topic at the International ALS Symposium in a couple of weeks. I like their upbeat titles. We should hear the current state of the research.

http://www.mndassociation.org/resear...programme.html

Saturday 2 December:
12.00-12.15 Results of diaphragm pacing in ALS: decreasing the decline in respiratory failure and increasing diaphragm movement – RP Onders (USA)
12.15-12.30 Phrenic nerve pacing to improve respiratory function in patients with ALS – J Rosenfeld (USA)

John,
As I was off the boards for a year before it crashed..
Do you know if anyone that posted ever got one..
I did speak personally to Dr.Onders by phone ..years ago when they were enrolling for clinical trials for Spinal Injuries..
As Gary back then was "highly opposed to the vent" ..I figured what the heck..I'll try to call him..to my suprise I didn't get to speak to just his secretary... but to Dr. Onders himself..
At the time though he stated he felt in ALS it would not do any good..as the two pherenic nerves would ultimately become paralyzed by the disease..but I asked if it could theoretically buy PALs more time..as if they were breathing on their own ...didn't the pherenic nerves have to be functioning somewhat for now? ..
He was very polite..but said they were just doing clinical trials on Spinal Injuries...and did not seem too enthusiastic about the idea for the potential usage in ALS at the time..
I'm glad to see though he did try it in ALS..and am looking forward to hearing the results...Lisa

Lisa,

Hi, yes I know, I missed you. Onders appears to have had a change of thinking about the possibility of it helping in ALS. The husband of one PALS, Lonnie, posted about his wife Sue who, as of last March had the Onders' implant for about a year. Her FVC continued to decline during the period but Lonnie feels it may have helped all the same. He hasn't posted since the crash. Here is some of the discussion:

http://72.14.205.104/search?q=cache:...n&ct=clnk&cd=2

John

John,
I missed you too. Wow..it seems like I missed alot over the year I was gone.Thank -you for that link.
I can not help but think of Muonone. When I think of the diaphragm pacer. As he/she ( whomever) really felt strongly it could help.
From everything I looked up back then though it seemed to be quite an extensive procedure.Costly as well.
I remember briefly seeing Dr. Onders was going to do it in an ALSA update on PALs. But, never knew it took place already. Or that anyone from Braintalk posted about it.
Do you ever frequent the ALS-TDF website?...Dr. MCCarty over there put up a short post about diaphragm pacing there.Hopefully the results will be presented soon.
I never met Sue but wish her the very best...and hope it is an alternative for PALS .
Lisa

Hi Lisa,

I do read the ALSTDF Forum but not daily and somehow missed McCarty's post which basically scooped my own. I'm looking forward to the results.

John