Comments on: New Device Helps Man Who ‘Forgets’ to Breathe https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/ News Resources Sun, 28 Oct 2012 17:00:48 +0000 hourly 1 https://wordpress.org/?v=7.1 By: Joel Streed https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3792 Sun, 28 Oct 2012 17:00:48 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3792 In reply to Jeffrey Ng.

Jeffrey, Thanks for your note. We’ll forward it to the appropriate team here.

]]> By: Jeffrey Ng https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3791 Sun, 28 Oct 2012 08:20:02 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3791 Hi,
My Name is Jeffrey and I’m 43yrs old.
I’m staying in Singapore..
I’m curious as the i’ve just popped over to this website a while ago.. 28th Oct 2012 4pm (Singapore time)..
Would appreciate if I could get some statistical data of how many CCHS cases has been success and been able to use your product as of now Oct 2012..
This is because I’ve a daughter who was diagnosed with CCHS or ROHHAD syndrome in year 2005 and is currently still on a ventilator support for 24hrs a day since year 2003.
Hopefully, she can have your company endorsement to try it and help to establish your product in Singaporeor south East Asia..
kindly advice..Thanks!
Hope to hear from you soon!
Regards.
Jeff

]]> By: mayoclinic https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3790 Tue, 22 May 2012 15:13:53 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3790 Dr. Reeves responds: “This is a very sophisticated question. The Avery system you mention has been around for many years. As you also mentioned the Avery System isn’t a perfect solution, and some patients aren’t successful with it. The system implanted for David to use is new, and not approved for use for central hypoventilation. The device is approved for use in Spinal Cord Injury and Amyotrophic Lateral Sclerosis. Because it works so well in those patients we thought it could help David as well. To our knowledge he’s only the fourth person in the world to receive this system for congenital central hypoventilation. We’ve been very pleased with its results thus far. It’s possible that other patients with central hypoventilation might be able to benefit; however, there haven’t been any research studies to prove that. Hopefully, we will be able to do that in the future.”

]]> By: mayoclinic https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3789 Sat, 19 May 2012 05:43:07 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3789 In reply to Robin Youngwirrh.

We are passing your question on. Thanks for the interest.

]]> By: Robin Youngwirrh https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3788 Sat, 19 May 2012 01:13:27 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3788 This is very interesting. Having been very involved with chairing the 2011 CCHS Conference I was under the impression that Avery Biomedical was the only phrenic nerve pacer manufacturer that was FDA approved. Is this new product FDA approved and if so, how long? There are many CCHS patients that the Avery pacers have not worked for and for various reasons. This could be a very important new option for them!

]]> By: mayoclinic https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3787 Fri, 18 May 2012 21:42:44 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3787 This is a new device, to the knowledge of myself and the company David was the forth person to receive this new device for this problem. There is another device that requires a much more complicated surgery that has been around for over 30 years. David had the device placed as an infant, but it never worked well for him. I suspect the folks commenting are thinking of that older device. Dr. Reeves

]]> By: Talkblogguy https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3786 Fri, 18 May 2012 21:26:45 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3786 Amazing every breathe we take leads to Talk and intern progress in Technology…which leads to action! Thanks Staff of Mayo for keeping us all on the right track!

]]> By: mayoclinic https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3785 Fri, 18 May 2012 19:49:53 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3785 In reply to Elizabeth Louie.

The device is manufactured by Synapse Biomedical in Cleveland Ohio (http://www.synapsebiomedical.com/). It’s approved for use in patients with spinal cord injury and amyotrophic lateral sclerosis.

]]> By: Elizabeth Louie https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3784 Fri, 18 May 2012 18:50:24 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3784 Out of curiosity, who is the manufacturer of the pacing system?

]]> By: mayoclinic https://newsnetwork.mayoclinic.org/discussion/new-device-helps-man-who-forgets-to-breathe/#comment-3783 Fri, 18 May 2012 16:41:56 +0000 https://sharing.mayoclinic.org/?p=11476#comment-3783 Thanks for your note. We have removed that statement and are checking into it.

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