Is there a forum for central sleep apnea patients with Remede implant

Posted by tncentralap @tncentralap, 5 days ago

I have severe central sleep apnea and had the Remede implant 2 years ago and am looking to connect with others with this implant. I am particularly interested in knowing how others are being treated and monitored and if there is any news about the future of this device. The device has been a real blessing and replaced a very aggressive BiPap ST machine that was terrible.. I now have an excellent rep from Remede monitoring and adjusting my device but continue to worry about the future of the device.

Interested in more discussions like this? Go to the Sleep Health Support Group.

John, Volunteer Mentor | @johnbishop | 5 days ago

Welcome @tncentralap, There is another discussion started by @drwass2 that mentions the Remede device that might be helpful to scan through.
-- Central Sleep Apnea, Anyone try supplemental O2 via nasal canula
https://connect.mayoclinic.org/discussion/central-sleep-apnea-anyone-try-supplemental-o2-via-nasal-canula/
I did find a research article from 2020 about the device that may set your mind at ease.
-- Transvenous phrenic nerve stimulation (The remedē System) shows sustained safety and efficacy through 5 years: https://remede.zoll.com/press-releases/transvenous-phrenic-nerve-stimulation-safety-efficacy/.

It's great to hear you have a good rep from Remede monitoring your device. Are you able to discuss your concerns with the rep?

tncentralap | @tncentralap | 5 days ago

Our rep has been great but we do not have direct contract with her other than when we see our doctor a few times a year. We have never had any conversation with another patient as there seems to be so few scattered over the world. We were able to speak very briefly to one patient in the waiting room one time but really no time to discuss any issues. The device and our doctors have been great but it requires hours of travel each time the device is adjusted because so few hospitals deal with the implant.