Diaphragm Pacer

[Al]

I sent away to the company to get their info package and am taking it to my pulmonologist.

He was under the impression that it wouldn't work for us so he wants to see the new information. It's called a diaphragmatic pacemaker.

It's from Avery Pharmaceutical.

[John1]

I've started a new thread since this was brought up on the Panic Attacks thread but deserves its own. Here is a link to this topic that I began in January on another ALS forum.

I believe the pacer that CIARA1 refers to is actually the one developed by Dr. Onders at University Hospitals, Cleveland, Ohio. It does seem to benefit PALS, at least in the early going of a 10 person trial for people with ALS.

They are still looking for another two I believe so those of you who live in Ontario or are within reach of Cleveland for ongoing monitoring during the trial might be interested as an alternative to other respiratory aids like venting or even bi pap.

[David]

Here's the original post about diaphragmatic trial that is available to ALS patients: http://www.als.net/forum/topic.asp?TOPIC_ID=391#1434

Unfortunatley one of the exclusions for patients wanting to be involved is the following:


Be unable or unwilling to travel to Cleveland for required follow-up visits


A general definition for diaphragmatic pacemaker is available <a href="/definitions/diaphragmatic-pacemaker.html">here</a>.

Here's Avery Biomedicals homepage (http://www.averybiomedical.com/).

[John1]

There's a fair bit of confusion over the device used in the Onders' ALS trial at University Hospitals, Cleveland. The phrenic nerve pacer that Dr. Onders is using is NOT the one sold by Avery Pharmaceutical. It is one under development by Case Western Reserve, also in Cleveland. Here are some links that may aid in clarification. Note also that the device, if implanted at the ALS trial, will be free unlike the one sold by Avery. It is also the device that was implanted in Christopher Reeve and got him off his ventilator.

http://ora.ra.case.edu/showcase/showcasedetail.asp?type=post&id=%7BCD8FAFB3-C3EB-4322-8F81-7EAE639811D7%7D

http://casemed.case.edu/public_affairs/bulletin/vol9-no1-2003/reeve.html

[Al]

I apologize for the delay in getting back to you, but I only recently received the OK to forward you the contact information for the surgeon at at the Columbia University Medical Center in New York who will be running the ALS program there.

Yesterday, I spoke with him, and he indicated that he is ready to start evaluating patients. He can be reached at:

Mark Ginsburg, MD
Columbia Thoracic Surgery
161 Fort Washington Avenue, Room 310
New York, NY 10032
Phone: 212-305-3408, Fax: 212-305-3474

The person who you would speak to in his office regarding any referrals, medical records, etc. is Mary Allen. Please let me know if I can be of any further assistance.

Thanks,

Ken