Hypoglossal Nerve Stimulation System

Hi, I know this subject has been spoken about previously, however, I was wondering if anyone here has actually taken part in trials?

Previous trials have taken place on the Apnex HGNS and they are about to do more trials worldwide with 132 people taking part. Here in Australia twenty-seven people are being selected to take part and I have put myself up for selection. I don't know how far I'll get but so far I qualify and I'm hoping I make it to the final stages. So, just wondering if anyone has taken part or know of someone and their experiences.

When an article was written in the newspaper in Victoria they had over 800 phone calls by interested people!

I am going to an information session tomorrow as I am curious.

I will post about my experiences tomorrow. Remind me if I forget.

49er

Oh, great ... good luck! Where are you? US? I'd love to hear how you go ... and how many people attend. Thanks.

debtheveg wrote:Oh, great ... good luck! Where are you? US? I'd love to hear how you go ... and how many people attend. Thanks.

Sorry, I should have mentioned that. Yup, I am in the US.

49er

debtheveg wrote:Hypoglossal Nerve Stimulation System

Why would you get excited about this?

Go find the studies on the internet. The Apnex device only reduces apneas by about 50%. Most people could achieve that just by sleeping on the sides which doesn't require surgery and costs nothing.

Why be excited??? Are you kidding??? I'm not so much excited as keenly enthusiastic ... for myself and perhaps my children and grandchildren and your grandchildren! This could be a first step for an alternative to CPAP. Results may not be perfect ... just yet! But as with any new medicine or medical device, it has to start somewhere and with someone. It is only by doing trials on 'guinea-pigs' that progress can be made and ideas developed.

As for sleeping on my side? Well, I'm a stomach sleeper, sometimes on my side, never on my back. I don't snore, not very overweight. Tried CPAP, hated it ... because I sleep on my stomach! So, if this new device can help, I'm happy to be involved!

Hi 49er,

How did you go today at the information session? You asked me to remind you .....

Deb

debtheveg wrote:Hi 49er,

How did you go today at the information session? You asked me to remind you .....

Deb

Thanks Deb.

I decided not to go because last night, I finally made complete peace with the CPAP and am all in. There was previously little chance I was going to go through this but still, I was curious. After last night, I lost all my curiosity.

Also, I need to run some crucial errands and since this place wasn't nearby, I feared I wouldn't have the energy do what I needed to do.

Sorry, I know I had promised a report. But I think after reading the preliminary reports about their goal being to only get the AHI below 21, I wasn't as enthusiastic.

Good luck to you in getting selected. You seem to have the right attitude.

49er

I just had a sleep study and talked to the sleep tech about this device. He said they have several people taking part in the research studies at his lab. This device requires titration in the lab during a sleep study more than once- one woman he mentioned had been in four times - sorry I don't remember the time frames including healing from the surgery. The sleep technicians get you all wired up and then the research people take over. They titrate a little at the time then have to wait until your body adjusts to the present current before another titration.
I personally have a deep brain stimulator for Essential Tremor (this is the device used for Parkinsons patients to reduce hand and arm tremor). It took at least six adjustments of the device to get the best results. It is worth the trouble for me. I will require additional adjustments as my disease progresses.
I also think this is exciting research and seems to show promise. I am excited about any research that may improve the lives of those with sleep apnea and future generations.
I'm in the US, in Virginia.
Sentara Bayside Sleep Disorder Center in Virginia Beach, Virginia is conducting this particular study.

Thanks for the replies 49er and Mary Z. 49er, if you're happy and doing well with the CPAP then that's great and you probably don't need something more intrusive, at least for now, anyway. Mary, I think that's wonderful that you have the device you have and that it's improved your life. I hope it continues to help you.

Yes, from what I've found out, the HNSS is quite involved and requires many trips back and forth both before and after the operation. I'll be travelling about four hours to Sydney each time but I'm happy to do so if this implant makes my life and health better. They'll be monitoring for several years.

So, if anyone is interested, I'll keep you updated with what's going on. I'd love to hear from anyone though, that may have gone through any part of the process. I guess if they have the device, they're not using CPAP and therefore may not be looking on the forum!

Has anyone had any experience with the HNSS?

I do give these guys credit for trying, apparently with private money.

HNNS attempts to keep the airway open with muscle tone and that is a good thing.

However, I believe that in addition to poor muscle tone most of us with OSA have another problem that is at least as significant. Our airways are very small for the task at hand. This is why many of us breathe irregularly when we are awake.

In my own case I also believe a narrow airway restricts my performance at aerobic exercise. So even while I am awake and maintaining the patency of my airway with muscle tone there is a problem with restriction due to size.

For this reason I am not optimistic about the level of success that HNNS will achieve. I believe the CPAP pressurized air is needed not only to overcome lack of muscle tone but also to overcome a narrow airway. Force that air through the airway.

Just my opinion of course.

debtheveg wrote:So, if anyone is interested, I'll keep you updated with what's going on. I'd love to hear from anyone though, that may have gone through any part of the process. I guess if they have the device, they're not using CPAP and therefore may not be looking on the forum!

Definitely keep us posted, please.

debtheveg wrote:Has anyone had any experience with the HNSS?

Hello debtheveg

A friend in Sydney has told me about the study, so I thought I might ring up tomorrow.
Looks like I wouldn't be suitable as my AHI was only moderate 15 (mostly hypopnea) and is now 1.4 on CPAP.
I would in any case me most interested to hear all about it. The implant looks, from an image, to be the size of a pacemaker.

jandi

Since the device is similar to a pacemaker,
the cost might be comparable to a cardiac pacemaker
(10, 20 times the cost of cpap--or more.
Unlikely any insurance would cover it if that's the case.