Inspire Implant : My Journey

[RMSko]

Malloc - Any updates on your Inspire journey? I’m still looking at this and am interested to see how you’re doing.

[Malloc]

Just over two months in and not much to report at this time. I've worked up enough stimulation tolerance to move forward with the followup titration sleep study, but the labs in this area are backed up due to C19. Increasing the initial delay helped greatly and overall Inspire is still working well for me.

[Malloc]

Finally had my first titration study on 7/9. The process was simple and quite a bit less stressful than my first in-lab study circa 2013. I remember being nerve wracked the whole time just hoping for some answers, but this time I just went to sleep. They attach a transmitter to you so the tech can play with settings while watching apnea events.

In the morning they gave me back the remote recalibrated to a different range of settings with similar intensity. For example, I had worked my way up to 8 out of 10 until this point and now the previous 8 became 3 so I have more range. I didn’t ask what specific settings needed changing besides intensity since the device has about 20.

Afterwards, my sleep doctor called and was very excited to report that my AHI with optimized settings was down to 1. Yes, all the way down to 1 from low 20’s. I didn’t necessarily feel that much improvement the morning after, but apparently I was somewhat restless in the early part of the actual study. Since then I do notice some improvement at home. Honestly it was working so well before the study I wouldn’t have felt the need to do one.

Overall Inspire has been a life changing and successful experience for me.

[Malloc]

Since I haven’t posted in awhile and there seems to have been more Inspire interest lately: six months in I’m still doing well with the therapy and basically don’t even notice the device under skin or worry about it. The scars have finally started to noticeably reduce in size and color as well. My mind has become so used to the sensation I actually don’t even need to pause any more in order to fall back asleep.

Inspire ended up reaching out to me for some focus group input which was a very positive experience overall. One piece of feedback shared by most users seems to be the lack of a public community where people can get non curated experiences when they’re considering Inspire (hence one of my motivations for posting here in the first place). Here’s to hoping they listen.

For now, I would encourage prospective Inspire candidates to check out the private Facebook group (it’s not required to have Inspire implant, just have to request access) since there are lots more consolidated user experiences there.

[mmorel536]

Some small updates since I think they might be helpful.

Winter in Colorado is known for being very dry and I've always had more trouble sleeping in winter due to dry mouth. Inspire actually seemed to make this worse since my tongue would often force open my mouth, precipitate dry mouth, then reduce the effectiveness of Inspire. My sleep doctor recommended trying a chin strap or mouth tape to which I was somewhat resistant at first (why do Inspire if I need yet another thing to attach at night right?). After trying and failing at using a chin strap because it kept me awake like CPAP headgear, I gave in and tried mouth taping combined with Inspire. Early verdict: it's actually surprisingly effective and the feeling of tape on the mouth doesn't keep me awake. The only downsides are cost of the brand name strips and the fact that they don't stick through the night if you have more than two days facial stubble.

In other news, since my oral appliance was no longer needed, my dentist strongly suggested I consult with an orthodontist since it had greatly (and negatively) impacted my bite. Turns out two years of dental appliance will require almost two years of orthodontia to correct. Let's just say I'm not so hot on dental appliances anymore since it didn't work out for me and ended up causing problems.

[cronkster]

Thanks for your post.  I'm due to be sceduled for the Inspire in the next 2 or 3 months and would like to hear how you're doing with it.

[cronkster]

My situation:
I've had nasal septum and turbinates fixed twice.  Palate and uvula (twice for the palate).  Hypoglossal advancement and hyoid suspension.
Sedated endoscopy shows blockage from palate and tongue base, and I'm approved for the Inspire device. I've also been thinking about the Inap device, because my results with CPAP have been so undependable.
 I've been reading a couple of studies about it carefully, and although it pulls on both the tongue and the palate to seal them together forward of the airway, it doesn't increase the space between the tongue base and the back of the throat.  In fact it decreases that space slightly, even in people that it helps, due to the way it changes the overall shape of the tongue as it suctions it upward - the base of the tongue ends up a bit further back.  I've had several palate surgeries, and a sedated endoscopy that I just had (to see if I qualify for Inspire device) shows that most of my apnea is caused by the tongue base.  So the Inap may not help me much, if at all.  And unless I take part in a study, there's the downside that if I use it exclusively, as opposed to cpap, I won't know how well it's working.
I've also had a sort of breakthrough in the last week.  My results with APAP have been all over the map - from the 30s AHI down to 2.  Now, I've tried mouth taping and have been getting consistent results below 5.
So even though I'm approved for Inspire, I may cancel the surgery.  I'm not happy with the big battery and circuit in one's chest, or further messing about with the nerves in my tongue after already having the tongue suspension surgery (that didn't work).
Both the Inspire and the Inap only seem to get people down to the 10 or so range, on average.  If I can get 1s and 2s consitently with the APAP using mouth taping, this health improvement, even if subjectively I'm not attentive enough to sense during the day, can be read off the machine each morning and is probably (finally!) making a real difference to my health and longevity, so it's probably worth the hassle of being tied to keeping a machine with me.
I'm also interested in the aerSleep, which suctions itself under your jaw and is undergoing testing now.  But again, you'd need to be studied somehow to make sure how well it's working.  For me, that device, from the animation on the website, looks like it would move the base of the tongue forward better than the Inap would, and would be easier, less invasive and more comfortable to use.  Even if I continue to use APAP, the aerSleep looks like it could be an ancillary device for clapping on when lying back to take a nap.

[clownbell]

@ Cronkster - May I ask which moth tape you use. Taping really helps me and I am looking for something that doesn't rip my face off in the morning.

[cronkster]

Well, I probably don't have very good advice right now because I'm on vacation at my place in Croatia.  One has to take what one can get here - none of the specialized offerings are available.
I've gotten some regular old white, 2 inch wide adhesive tape at the pharmacy.  I close my lips and put a swath of that across my entire mouth, including some of my mustache and beard below my mouth.  It sticks really well and I can re-use it a couple more nights.  Because I'm paranoid about it coming loose during the night, I then put a piece of elastic bandage - the grabby kind that sticks to itself - over the tape and around the back of my neck (like a gag), lapping itself in back, to put a little pressure on the adhesive tape as some extra encouragement not to come loose if I move my mouth or jaw.  Then I put on my mask, making sure that the headgear in back goes over the elastic bandage to help keep that adhering to itself and my skin.
Yup, in the morning that adhesive tape is stuck on well !  It doesn't actually take any of my whiskers or skin off, but it needs a bit of care and isn't exactly comfortable to peel.
When I get home I'll order various products like Cover Roll Stretch Tape, or maybe Somnifix strips, but for now, I'm an overjoyed happy camper to finally find out about these mouth leaks.  Fixing them is a leap forward for me.
Continued good luck to you, and let us know what products you end up liking.

[joepublic23]

How has Inspire been working for you? Can you get 2 remotes for it? If you don’t mind my asking, how visible are the scars from it?