Phrenic nerve stimulator thoughts?

[EdElliott]

Cardiologist wants me to look at a rememde phrenic nerve stimulator implant to give me relief from my CA. I have been on an ASV for four years with reasonable success. The doctor installing the implant said this would cure my CA and wouldn't be a puff of air. He is working with my sleep doctor to get her opinion. My question is? If all three drs. say yes to the procedure what should I do it? Your thoughts and experiences would be appreciated!!!

[Gideon]

I don't have enough info about your centrals to even venture a guess at this. What is the cause of your centrals?

What is the nature of the stimulator they are going to implant, what are it's algorithms? Precisely and specifically what events actually drive the stimulator?

I'm not against the surgery, just in formed on both the implant and your centrals.

[Sleeprider]

This is a relatively new technology approved in 2017 for treatment of CSA. The clinical trials were relatively small and I have no awareness of another member of the forum getting the implant. I hope if you choose to do it, you will continue to participate here and document your experience. From this article https://pulmccm.org/randomized-controlle...eep-apnea/

"FDA approved remedē System after a small clinical trial in 141 patients, who were implanted with either the working system or an inactivated device. At six months of followup, about half the patients with the Respicardia system had a ≥50% decrease in their apnea-hypopnea index (number of impaired breathing events per hour). Only one in 9 patients with a deactivated system had a similar improvement in overnight breathing.

Generally speaking, the FDA has a much less rigorous review process to approve devices, compared to drugs. Manufacturers must prove the device is safe, probably effective, and roughly comparable to existing devices."

[pholynyk]

Remember, even if all three (or more!) doctors say 'yes', you can still say 'NO" if you feel unconvinced or uncomfortable for any reason. You still have your ASV, after all.

[Motorheadrulz]

Resurrecting this thread...
After many years of struggling with my CSA and failed ASV therapy, I've been referred for the Remede implant. I also failed CBTI and all other treatments, so I've exhausted all options.

One of my main problems is severe aerophagia. My esophagus and associated sphincters are not working properly. So the ASV is acting like an air compressor and blowing up my stomach like a beach ball, along with a sh*tload of GERD. So the theory is get off the ASV, control the CSA, and thus reduce the gassiness.

This is probably not a good forum for user input, since they probably left after getting implanted. But has anyone got more info or friends who have since this post and noted their success?

TY, MHR

[Sleeprider]

The efficacy of Remede has shown up to 96% improvement in CSA in a 5 year study. This sounds very promising, and I look forward to hearing your first-person account of using the system. https://remede.zoll.com/press-releases/t...-efficacy/

“Since the initial trials, transvenous phrenic nerve stimulation has proven to be effective and safe in treating moderate to severe central sleep apnea. Demonstrating sustained benefit through five years is very significant for patients with this disease. The sustained benefit of the therapy is critically important for heart failure patients, whose disease is chronic and progressive.” said Dr. Maria Rosa Costanzo, Principal Investigator for the Pivotal Trial of the remedē System and Medical Director at Edward Hospital Center for Advanced Heart Failure and Heart Failure Research at Advocate Heart Institute. “We also saw substantial and clinically meaningful improvements in the sleep architecture. The shift to more deep stage sleep seen in this study may partially explain the positive impact this therapy has shown on arousal reduction and overall quality of life improvement. It is important that clinicians who see patients with central sleep apnea consider this therapy.”

Highlights from the 5-year data show sustained improvements from baseline that were highly consistent with the previously published 6-, 12-, 24-, and 36-month results3. The 5-year results include4,5:

96% reduction in central apneas
Overall apnea hypopnea index (AHI) reduced by 22 events/hour of sleep
Arousals reduced by 14 events/hour of sleep
Fourteen percentage point (absolute) increase in deep sleep (N2 – REM) and a 19 percentage point decrease in light stage sleep (N1)
Sustained improvement in daytime sleepiness
Consistent safety, in line with previously published data.

“Congratulations to all of the coauthors, study investigators, and patients who have contributed to the data collection and publication of this 5-year study.” said Dr. Robin Germany, Chief Medical Officer of Respicardia. “This is an important milestone showing durable, long-term effectiveness and a strong safety profile. We will continue to advance research on central sleep apnea and transvenous phrenic nerve stimulation as we increase access to the therapy for patients in need.”

[Motorheadrulz]

SR- will do, my man! 

I am just starting the process, so it will be a couple of months before results. I am concerned about increasing my snoring. I hope this finally mitigates at least 1 of my problems.

TY, MHR

[Motorheadrulz]

Update: I have to go out of state for the consult, and I managed to get an appt in early Oct. I've submitted insurance and last 5 PSGs to the clinic, now we wait...
I hope this thing works.

[cps22]

Best of luck - I hope it works out for you! Please continue to update. I know someone whose husband is really struggling with CA, and I'm sure they would be interested in your experience. 

As for your esophageal sphincters... this may sound weird but are you unable to burp?

[Motorheadrulz]

I can burp but not with positive pressure attached to my face.
I've also had 2 GERD surgeries, so the top of the stomach is pretty tight. So air is getting trapped until it finds a way out.