1. B

    Diaphragm Pacer

    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...
  2. Nuts

    DPS Surgery Discontinued at Duke

    We're at Duke for our quarterly clinic appointment and just learned that they've stopped doing the DPS surgery here. Apparently a study out of England showed that people who have the surgery are not living as long as those who don't. They don't know if it's the pacer wearing out the diaphram or...
  3. tripete

    DPS - PEG Seurgon

    I had my visit this morning to discuss getting the DPS (Diaphragm Pacing System) installed. For those who do not know this is where they surgically place electrodes on your diaphragm to stimulate the muscle. Wires come out of the side of your stomach and attach to a small box that controls the...
  4. N

    Prognosis: One Year

    Hello to all who happen to read this. We went to our second ALS Clinic in Pittsburgh PA today. Once again there was no respiratory therapist present. argh. I had called several times to ensure that one would be present to check T's breathing levels since we are going to Cleveland a week from...
  5. J

    Do you let someone give up without a fight?

    Hi all, My 47 year old husband has ALS for the past 3 years......He has now decided that he does not want any medical assistance, like a feeding tube, diaphragm pacer or any other kind of medical intervention. On one hand I think it is very brave of him, but on the other hand I don't really...
  6. John1

    Are any Canadians using the diaphragm pacer?

    I am at the point that my FVC (70%) is approaching minimum levels for implanting the diaphragm pacer (50%?). I have been following Dr. Onder's research from the outset. I know that the device was being trialed in BC a few years ago for ALS but don't know the outcome. Are any Canadians using the...
  7. F

    Please Read Joe Pacing

    I tried to respond to you Joe, but the moderators seem to not want to let my post through. I have seen several neuros over the years but in all reality and in my opinion I think they are worthless. My main Neuros are Doctor Steven Scelsa at Beth Israel and Dr. Boylan at Mayo. I have not been to...
  8. H

    My latest news

    It's official. My husband is scheduled for his feeding tube and diaphragm pacer surgery. This can't really be happening. I'm so heartbroken and afraid. Ihatethisihatethisihatethis
  9. NotALS!

    I'm back

    Everytime one doctor says I don't have ALS, another one says I do. Its been back and forth 7 times. Noone can figure this out! I just went to MassGeneral and the head of the EMG lab, Dr David, said I didn't have ALS because I improve on antibiotics and IVIG but then he did an EMG and said I DID...
  10. C

    Diaphragm pacer system

    My numerologist has been after to me to get the diaphragm pacer. I am on bipap, but she says they like patients on both yo get the full benefits. I could only find one story on the forum of someone having this done. I'm curious how many pals here have had it done, and what were the results and...