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Diaphragm (Phrenic) Pacemaker - - Need Decision-Making Guidance

Hi all,

I need information to assist a relative who may need a diaphragmatic (phrenic) pacemaker. Any information on the following is appreciated:

1)  Which companies make the device?  I am aware of only Avery Biomedical Devices.

2)  Which institutions perform the implant procedure?

3)  Is this an experimental device or procedure?  I have heard that it is available in only two states.

4)  Are there better devices, more effective or lower cost treatments available overseas (outside USA)?

5)  What are the immediate and long-term risks?

6)  Special insurance issues?  eg if it's an experimental procedure, etc.

7)  Any other considerations or information that may be helpful.

Again, any assistance is appreciated !
3 Responses
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147426 tn?1317265632
I can't imagine any one would really care if you ask a question on different forums.  The problems seems to come when you post too often on question-restricted forums like the Patient-to-Doctor Neurology Forum.  You need info.  You need to go where the info is.  Good luck again.  Quix
Helpful - 0
Avatar universal
"I gather you are dealing with a ventilator-dependent problem and they are trying to wean from the ventilator. Is this correct?"
10-4, exactly.

The affected person is my nephew, and I've just started gathering info to help those who will be directly involved in the decision making.

I hope that cross-posting to multiple forums isn't frowned upon.  Since it involves a neuro-respiratory condition, I felt that my inquiry needed to go to both forums.
Helpful - 0
147426 tn?1317265632
Hi, I've seen your repeated posts and that no one has answered.  I'm sorry, I don't know anything about the topic.  I looked around the MedHelp Forums and was about to suggest that you post on the Respiratory Forum -- and you already have!  The doc there is right up to date with responding.  I really hope he/she can give you some information, as I gather you are dealing with a ventilator-dependent problem and they are trying to wean from the ventilator.  Is this correct?  I wish you the best of luck.

Quix
Helpful - 0
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