Diaphragm Pacing System (DPS)

[starente15]

Hi all. I'm trying to found out when/if DPS is a viable option and if it's available to anyone. Is it still in clinical trial? TIA!

 

[patrick123]

I have had a DPS for over a year. It's approved by the FDA for compassionist use. There are several studies going on. I'm part one study. Some of the requirements for a DPS are that your FVC is over at least 50% and you have an active phrenic nerve. Speak to your neuro. To if it could be of useful benefit.

Patrick

 

[starente15]

Thanks Patrick. My dad goes to his first clinic on Friday and I want to ask about it.

 

[Nikki J]

Definitely ask and if it is something your dad wants push them a little bit about how to monitor him so that he does not miss the window of opportunity. As Patrick says there is a low limit where it won't work so you can't have it but they won't do it when your breathing is completely fine. I know too many PALS that wanted one but did not qualify. Some centers are doing ultrasounds to monitor the diaphragm

 

[patrick123]

As Nikki stated the window is very small. So your diaphram and breathing will need to closely monitored. I had my DSP pute in when my FVC went down to 68% in a three month period. I got a BiPap at the same time. Ask questions and when you think you are done ask more.

Patrick

 

[Santa joe]

Went to Mayo and was so disappointed when Santa Joe did not qualify. Small window of opportunity.

Debbie