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Is there a forum for central sleep apnea patients with Remede implant
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.
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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?
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1 ReactionOur 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.
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1 ReactionI believe the remede device is programmed to only work when you are sleeping.
Is this correct? can it be make to work all day long.
I think My o2 drops during the day also.
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1 ReactionI think it only works when you’re sleeping. Here’s the manufacturer website - https://remede.zoll.com/remede-system/
The one I have is set to come on at bed time and off at normal waking time. I don't think it would work out to keep it on all day as it actually puts an electrical impulse to your frentic nerve that makes your diaphragm move or breath. It takes some getting used to this initially and it is set to come on at a time that you would already be asleep so that you do not fight it. If I get up it will shut off and will wait and delay coming on when I go back to bed. They also give you a safe side that you can turn on which will shut it off in case you are having trouble with it. When you turn away from your safe side, it will gradually come back on. You would need to ask the manufacturer for sure.
correction- phrenic nerve
Thanks for the feedback. I will probably follow up with their invertation to one of their web programs. I assume it is mostly a hard sell, but I would get info.
Right now, Im Ok with my ASV machine but settings are 15 with possible automatic jump up to 24 which is so high it is difficult to get mask not to leak when it jumps to 24. I'm still looking for a "real" diagnosis as to what my lungs are doing. So far its, try this (ex: Bipap) if that doesn't work we try something else. Well, it didn't work for 6 months and actually caused more problems. (Chayes Stokes pattern).
I do have central sleep apnea and I think I also have problems during the daytime. I will work with lung doctor and sleep specialist on it.
So far, 4 complete sleep studies in the clinic and a few lung function tests.