Phrenic nerve stimulator

[Zina Perry]

Does anyone have or been tested for the nerve stimulator? There were only a couple of posts and they were old. My husband, Mike, was diagnosed in December of 2007. His onset is the respiratory. He is on the bipap most of the time and his oxygen levels have decreased in the last 3 days. He can eat, talk, walk and has no other visible symptoms. He has lost weight and cannot do much of anything due to the respiratory problems. I was hoping he would be a candidate for the stimulator. I want to mention it to the doctor, but wanted some imput before I ask. Again, thank everyone for their stories and maybe some day they WILL find a cure for this HORRIBLE disease.

Thanks,
Zina Akin Perry
Rusk, Texas

 

[namita]

Hi!
Sorry to read about your husband . Hope he is stable right now . My mother too is suffering from the same ailment Today i visited a patient suffering from spinal cord injury who underwent Phrenic nerve stimulator implanted. It has been done for the first time in India and i was just wondering if the same can be done for my mother on ventilator though for MND and not SCI. Did your husband finally undergo phrenic nerve stimulator implant? If yes how was the experience and did you observe any improvement as in decreased ventilator /bipap dependence? I would be earnestly waiting to hear from you .
Thanks and regards
Namita

 

[andyvaughn]

Zina,
You are referring to the diaphragmatic pacer study, correct? The Methodist Hospital in Houston is recruiting for this study, the inclusion criteria states that the FVC must be 50-80% at the time of screening, and at least 45% at the time of surgery, do you know your husband's FVC?
My husband does not have the pacer, I have emailed the recruiter for the study at one of the California locations, no response yet. But I have spoken - via email - with one patient that has it, that seems very pleased with the results. This person has a low FVC, (I cannot recall the exact number, but below 45) and yet still rests comfortably on her back, etc. You can find the contact info for this study on Clinical Trials.gov, hopefully they can answer your questions, and you can pursue this study.
Andrea - wife of Pals Jim