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.

[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/show...EAE639811D7%7D

http://casemed.case.edu/public_affai...003/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

[CRF8]

My wife had her diaphragm pacing system procedure today. I will post the following on ALS forum, ALS TDI & PLM. So if you read one, you’ve read them all.

At a later date I will go into the benefit seen, if any, etc.
For now I just want to let people know how to get it done in the USA; despite rumors that it can’t.

I suggest anyone interested read the entire Synapse website. Those PALS in UK may want to go to Paris, contact the synapse European rep listed. He is very helpful... We considered this avenue, but my wife was scared due to the travel & distance involved.
I did speak by phone to a U.S. PALS that went to Paris, he was very happy with the treatment there.

Back to the USA…we originally tried 2 hospitals in Florida where we live. Both were involved in the SCI/ ALS study. Neither worked out & we wasted 2 months time & decrease in FVC. I have heard (second hand info) Dr. Onders can’t do procedures at this time either.

The bottom line if you want this done now, Piedmont Hospital in Atlanta, GA is the only place to go. My wife, another PALS & a spinal cord patient were all done in one day.
Synapse representatives were there too. It is assumed you will be paying for the deal yourself. They will give you paperwork to file for insurance, but we were turned down by our private insurance in advance. The cost is a lot, but if you have a 401 or decent assets it’s within reason. Synapse gives you a break on the price of the device. The hospital gives you a discount if you pay within a couple weeks, the OR & recovery are billed by 15 minute increments. The Dr. & device must be paid at time of pre-op visit. Anesthesia bill is separate also.

TIME LINE
3 weeks in advance -Pre- neuro & pulm. Records sent to Dr. K. in Atlanta
Sunday- arrived Atlanta, stayed at a hotel in Buckhead area.
Monday- blood tests, chest Xray, sniff test for diaphragm function
Meet the Dr., basic exam, questions answered.
Tuesday- since we finished everything Monday, we toured Atlanta Aquarium,
Left hotel & moved to Hospital guest rooms, ask for a handicap access room
As of 10pm no medicine, food or drink
Wednesday- 6 am prep at surgery center, meet anesthesia Dr. & nurses
830 am operation… 11am done, Dr shows me photos of implants
states she got good movement from the implants
moved to recovery room with pain pills, 2 minute visit allowed, x-ray,
released to family about 5pm, pain from the gas which has risen to her neck & shoulders; given 2 pacing units
Thursday meet with Synapse rep & Dr. about use of device

serious inquiries only please- contact: Claudia Tafurt <ctafurt@atlcts.com> office manager for Dr. Khansarinia Atlanta Thoracic Surgery

[tdamess]

thank you for information appreciate it very much and please keep us updatede

[Big Mike]

Thanks for the update, CRF8. Glad to see the procedure went pretty well for your wife. Please keep us updated as to your wife's progress with the pacer.

P.S. I know you can't disclose costs but can you tell me if the procedure is cheaper to have done in Paris, France as opposed to Atlanta?

Thanks,
Mike

[CRF8]

update to my wife's experience with implant DPS:

It has been 3 months since the procedure. While her FVC has continued to fall, although slower, Her ABG CO2 today was 36%, ph normal... Not bad, huh? We attribute this to the DPS (and bi-pap). I have waited 3 months to post this, just to be sure, but I don't need a 3 year placebo controlled double blind study to see the DPS is working.

[Al]

Thanks for the update. Glad to hear some good news today.

AL.