Diaphram Pacing Stimulation

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ZenArcher...I thought it sounded good and was willing to consider it, when the time is right...I do wonder if it is a political thing with the NHS (socialised medicine) paying for stuff...I will certainly be asking for a second opinion
 
Hi guys, don't know if you have gotten any new updates or not, I can share my experience. I started the study that started last year. The one they did with 100 patients thru the USA. Dr Orders, taught some other drs. so the could over it in like 10 different areas. Henry Ford Hospital got so many people I got right on for info. I have been on the study my year is up next week. We still get to continue with them. For me it has been great! I'm not on anyother breathing assistists. Yes, Augie got it done also. One other thing I can say about cost is in the 13 page contract I signed, because it said it's classified be the FDA as investigational Not Experimental, category B which the device to be safe and effective. I got lucky I guess cause mine was totallycover, thank god cause we're as poor as they come as you all know that same feeling. The company are great, I do know the last patient got the implant last Oct., but they are trying really had to get it past the FDA. Hope this helps anyone. FVC did have to be between 85% and 45%.


roni
diagnosed 05
 
Update on Diaphragm Pacing

My girlfriend with ALS received the Diaphragm Pacing Stimulator last week in Piedmont Hospital in Atlanta. She has to heal before she can turn it on.

Any MD who currently does implants for spinal cord injured patients can perform the procedure, but you have to have a "compassionate use protocol" approved by the FDA. The physician can start this process, which can take up to two months. Your breathing capacity has to be within a certain amount (not sure what).

Apparently the FDA can take back an approval, so the general consensus I heard was as soon as you get the approval, jump on it. Not sure of this whole story, but thought I'd mention it.

The other option for this is a hospital in France which performs the procedure every Wednesday. I never could pin down the name of the hospital - the closest I could get was that they thought it was in Paris.
 
Widespread availability time frame?

Does anyone know when the Diaphragm Pacing Stimulator will become widely available to PALS here in the U.S.? It seems like it has good success in PALS.
 
Florida now

University of Florida surgeons today became the first in the state to implant the same kind of breathing device used by actor Christopher Reeve...
Click to expand...

One has been done in Florida now--for a spinal injury (non ALS) patient.

This makes so much sense to me--PALS muscles atrophy due to lack of neuronal stimulation, nourishment etc. is fine, so if the stimulation can be provided artificially, the muscles should remain functional.

http://www.jacksonville.com/news/me...his_country_boy_thrives_despite_his_paralysis

or

http://tinyurl.com/dpscrosby
 
Anybody using the pacer right now?

AHands said:
One has been done in Florida now--for a spinal injury (non ALS) patient.

This makes so much sense to me--PALS muscles atrophy due to lack of neuronal stimulation, nourishment etc. is fine, so if the stimulation can be provided artificially, the muscles should remain functional.

Spirit of this 'country boy' thrives despite his paralysis | jacksonville.com

The muscles may erode eventually but now that the technology is finally catching up the idea of how the pacer is supposed to work, it could delay the need for trachostomy ventilation for years if implemented early on before or just when the muscles begin to erode. PALS should be excited about this. I know I am.

From what I understand, the pacer is still in the clinical phase here in the U.S. but is widely available in Europe. Is anybody here using the pacer right now?
Click to expand...
 
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I think the pacer is also *great* news... delaying the decision about whether or not to vent for 18 months or maybe even beyond.
 
ROCMG... You always seem to be very knowledgeable, have you found anyone in the UK willing and able to do this proceedure...I think it sounds great BUT I asked at the London Chest Hospital and they said that they would not do it.
 
Jennifer -- I haven't heard of anywhere in the UK but I will definitely research it and send out a few emails. Off out for the day, but I will let you know what I come up with asap.
 
Any new news on this?
 
Here is a contact: Elmo, MaryJo [mailto:[email protected]]; she is at University Hospitals of Cleveland

Here are some details I received in late July:

"The clinical trial is complete and the data was presented at the ALSMND symposium in Berlin. It is likely FDA approval will be several months – possibly 6 or longer. The data from the clinical trial is strong for improving survival. We have learned there is a subset of ALS patients who respond significantly better to pacing."

Follow up E-mail [when I requested details regarding "subset" of patients that do well]:

"While we look at FVC – and we understand all of the clinical trials in ALS follow FVC as a marker, we do not believe it gives a good indication of diaphragm breathing. People who are still athletic with good shoulders can move an awful lot of air and obtain a fairly high FVC but be short of breath or have sleep disordered breathing.


When we evaluate for DPS – we do fluoroscopy of the diaphragm. This is like a live CXR where we watch you breath and assess how much your diaphragms move. We also do a phrenic nerve test – this in EMG of the phrenic nerve only and tells us whether your nerve still conducts.


The unfortunate thing about the “subset” is we know best who will respond to pacing at the time of surgery. The tests above help us decide whether we will take them to the OR. If you have poor diaphragm movement and no phrenic activity, you would be a poor candidate. If you have poor diaphragm movement but good Phrenic then you would be a good candidate. If you have diaphragm that move, we know we can still capture something. People who have UMN disease of the diaphragm respond better. Again, we know best at the time of surgery. While it does not always correlate, if you have UMN symptoms of extremities, you may have UMN of diaphragm. If you have pure lower motor neuron disease, it will likely not help much."

Hopefully this is helpful.

Regards,

Dan
 
I would like to hear anyone that has a pacer in,and is it working,type of ALS,feeding tube or not?

thanks becky
 
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