5 ms·

I wish there were some more startups attacking the sleep apnea problem. It is more common in the general population than people realize, and it creates many mor

I wish there were some more startups attacking the sleep apnea problem. It is more common in the general population than people realize, and it creates many more health problems. CPAP is only tolerated by fewer than half of patients (I can't stand how uncomfortable wearing the mask at night is while I sleep), and the efficacy of surgery is up in the air. The surgeon in the Bay Area that does jaw reconstructive surgery to open up more space for the airways charges six figures for the procedure, and it is not covered by insurance.

lsc 8y ago
>CPAP is only tolerated by fewer than half of patients I know several people who are in this boat... but without exception, all the people I personally know who did not tolerate cpap treatment just used one mask, and when that didn't work, they stopped. I think I went through like ten masks from three brands before I really dialed in one that was comfortable for me, and I think that's key to tolerating sleeping with a face-hugger. >the efficacy of surgery is up in the air. The surgeon in the Bay Area that does jaw reconstructive surgery to open up more space for the airways charges six figures for the procedure, and it is not covered by insurance. I know two people who got the less invasive version of the surgery where they hack out parts of the soft pallet or something, which is dramatically cheaper (and usually covered) - and they both rave about it, a way better ratio than the CPAP, but when I asked my doctor about it, he pointed out that it tended to work well at first, but the fleshy bits that are cut away tended to grow back. I didn't really research too much further... I mean, really, going under the knife every five years doesn't sound that unreasonable, but I dunno if that's how it works.
- Udik 8y ago
  I wonder if actually had any experience similar to mine: in short, I had no problem in using the CPAP but after a couple of years I started suspecting it was decreasing the quality of my sleep. I suffer of a- I think- mild-to-severe sleep apnoea; it was measured once and has been witnessed by anybody having the misfortune of sleeping in the same room with me. There have been periods of time when I used to wake up quite often at night with my heart racing and completely dizzy because of lack of air. Finally, scared by the horror stories about sleep apnoea, and despite the fact that I was lacking any obvious symptoms of daytime drowsiness, I decided to buy a CPAP machine (Philips Respironics). Had little trouble in adjusting to the mask- didn't even need a humidifier- and after a while I found the bedtime routine quite normal- except for the annoying aesthetical issue of sleeping attached to what looks like a life-support machine. I've used it regularly maybe for a couple of years. I can't say I witnessed any improvement in my daytime wakefulness or in anything else, possibly the opposite: I was feeling confused and found it difficult to concentrate, often forgetting mid-sentence what I was about to say. In the end I started noticing that I was waking up in the morning strangely lightheaded, possibly hyperventilated. Some people started asking me if I was sleeping at all at night. In the end I gave up using it, and found no noticeable difference. Actually my sleep apnoea has decreased since then, and at least the major awakenings due to lack of breath have almost disappeared. Anybody with similar experience?
  - Hydraulix989 8y ago
    Yes, when I was on CPAP, I also felt like I slept much worse with it on, despite the machine showing an AHI < 2.0 every night. One doctor suggested it was psychosomatic and that I am effectively cured of my apnea with the CPAP on. To this day, I continue to feel much more well-rested without the CPAP even though I _may_ have more apneas.
Udik 8y ago
There's at least two companies I was following hoping for some breakthrough treatment, both focusing on hypoglossal nerve stimulation- basically a pacemaker to stimulate the nerves that keep the airways open. One is ImThera and the other one is called Inspire. Not entirely sure of the costs and the results though.
cal5k 8y ago
I'm currently halfway through the process of getting both Surgically Assisted Rapid Palatal Expansion (SARPE), which I completed 6 months ago, and Maxillomandibular Advancement (MMA) which is happening in October. I'm in my early 30s. I never tolerated the mask well and couldn't fathom being strapped to it for the rest of my natural life. After reviewing the literature, it quickly became clear that soft tissue surgery was a poor option - surgical success rates are often less than 50%, and surgical cures are almost non-existent. At best you'd trade a lot of pain for a temporary, modest reduction in AHI. MMA, however, looked very different - in the hands of a skilled surgeon, surgical success rates are >90% and reduction of AHI to <5 is possible, though not guaranteed. A relevant paragraph: "Staged surgery protocols have been developed to address multilevel airway abnormalities that contribute to OSA. Generally, procedures that carry less severe risks and potential complications are performed initially. The Stanford group protocol reports a staged surgical success rate of 75 % in patients with mild-to-moderate OSA and 40 % in patients with severe OSA in phase I (palatal surgery alone or in combination with GA) to 95 % in phase II or facial skeletal surgery [53]. In some cases when soft tissue abnormalities are not considered to play a significant role, maxillomandibular advancement can be considered as the initial therapeutic option [45]." (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/) Among leading surgeons the view these days is that MMA is the gold standard and there is no reason to do soft tissue surgery first unless your physiology specifically warrants it. MMA does, however, require a skilled surgeon - in the hands of an inexperienced one you'll see much lower success rates and more complications. I did a ton of research before picking the surgeon I've been working with. Dr. Kasey Li is probably the surgeon you're thinking of. I'm Canadian but paid to have a consult with him to make sure I was on the right path. My understanding is that many insurers will cover the surgery now, although in my case I'm having it done in Toronto by an excellent surgeon. Between the two surgeries and orthodontics it will come out to about $20k over two years. In Canada the hospital stay and most of the surgeries are covered by provincial insurance, so about 3/4 of that cost is actually for braces + expansion device for SARPE. It's a long and sometimes difficult process, but my own personal calculus lead me to believe it was the best available option given the circumstances. If all goes well I should come out the other end with minimal or no sleep apnea, and as a bonus straighter teeth too :-D There is some really interesting work being done on implantable hypoglossal nerve stimulation devices (https://www.inspiresleep.com/ https://www.inspiresleep.com/) but in my estimation the jury is still out on the long-term prospects of that modality.
stordoff 8y ago
There are also apneas that don't necessarily respond to CPAP/BiPAP treatment. I've been told that I have central sleep apnea -- no effort to breath for up to 30s at a time -- but BiPAP treatment only made a marginal improvement in number/duration of apneas, and was discontinued as it was aggravating other conditions (skin disorder).

lsc 8y ago

>CPAP is only tolerated by fewer than half of patients I know several people who are in this boat... but without exception, all the people I personally know who did not tolerate cpap treatment just used one mask, and when that didn't work, they stopped. I think I went through like ten masks from three brands before I really dialed in one that was comfortable for me, and I think that's key to tolerating sleeping with a face-hugger. >the efficacy of surgery is up in the air. The surgeon in the Bay Area that does jaw reconstructive surgery to open up more space for the airways charges six figures for the procedure, and it is not covered by insurance. I know two people who got the less invasive version of the surgery where they hack out parts of the soft pallet or something, which is dramatically cheaper (and usually covered) - and they both rave about it, a way better ratio than the CPAP, but when I asked my doctor about it, he pointed out that it tended to work well at first, but the fleshy bits that are cut away tended to grow back. I didn't really research too much further... I mean, really, going under the knife every five years doesn't sound that unreasonable, but I dunno if that's how it works.

Udik 8y ago
I wonder if actually had any experience similar to mine: in short, I had no problem in using the CPAP but after a couple of years I started suspecting it was decreasing the quality of my sleep. I suffer of a- I think- mild-to-severe sleep apnoea; it was measured once and has been witnessed by anybody having the misfortune of sleeping in the same room with me. There have been periods of time when I used to wake up quite often at night with my heart racing and completely dizzy because of lack of air. Finally, scared by the horror stories about sleep apnoea, and despite the fact that I was lacking any obvious symptoms of daytime drowsiness, I decided to buy a CPAP machine (Philips Respironics). Had little trouble in adjusting to the mask- didn't even need a humidifier- and after a while I found the bedtime routine quite normal- except for the annoying aesthetical issue of sleeping attached to what looks like a life-support machine. I've used it regularly maybe for a couple of years. I can't say I witnessed any improvement in my daytime wakefulness or in anything else, possibly the opposite: I was feeling confused and found it difficult to concentrate, often forgetting mid-sentence what I was about to say. In the end I started noticing that I was waking up in the morning strangely lightheaded, possibly hyperventilated. Some people started asking me if I was sleeping at all at night. In the end I gave up using it, and found no noticeable difference. Actually my sleep apnoea has decreased since then, and at least the major awakenings due to lack of breath have almost disappeared. Anybody with similar experience?
- Hydraulix989 8y ago
  Yes, when I was on CPAP, I also felt like I slept much worse with it on, despite the machine showing an AHI < 2.0 every night. One doctor suggested it was psychosomatic and that I am effectively cured of my apnea with the CPAP on. To this day, I continue to feel much more well-rested without the CPAP even though I _may_ have more apneas.

Udik 8y ago

There's at least two companies I was following hoping for some breakthrough treatment, both focusing on hypoglossal nerve stimulation- basically a pacemaker to stimulate the nerves that keep the airways open. One is ImThera and the other one is called Inspire. Not entirely sure of the costs and the results though.

cal5k 8y ago

I'm currently halfway through the process of getting both Surgically Assisted Rapid Palatal Expansion (SARPE), which I completed 6 months ago, and Maxillomandibular Advancement (MMA) which is happening in October. I'm in my early 30s. I never tolerated the mask well and couldn't fathom being strapped to it for the rest of my natural life. After reviewing the literature, it quickly became clear that soft tissue surgery was a poor option - surgical success rates are often less than 50%, and surgical cures are almost non-existent. At best you'd trade a lot of pain for a temporary, modest reduction in AHI. MMA, however, looked very different - in the hands of a skilled surgeon, surgical success rates are >90% and reduction of AHI to <5 is possible, though not guaranteed. A relevant paragraph: "Staged surgery protocols have been developed to address multilevel airway abnormalities that contribute to OSA. Generally, procedures that carry less severe risks and potential complications are performed initially. The Stanford group protocol reports a staged surgical success rate of 75 % in patients with mild-to-moderate OSA and 40 % in patients with severe OSA in phase I (palatal surgery alone or in combination with GA) to 95 % in phase II or facial skeletal surgery [53]. In some cases when soft tissue abnormalities are not considered to play a significant role, maxillomandibular advancement can be considered as the initial therapeutic option [45]." (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/) Among leading surgeons the view these days is that MMA is the gold standard and there is no reason to do soft tissue surgery first unless your physiology specifically warrants it. MMA does, however, require a skilled surgeon - in the hands of an inexperienced one you'll see much lower success rates and more complications. I did a ton of research before picking the surgeon I've been working with. Dr. Kasey Li is probably the surgeon you're thinking of. I'm Canadian but paid to have a consult with him to make sure I was on the right path. My understanding is that many insurers will cover the surgery now, although in my case I'm having it done in Toronto by an excellent surgeon. Between the two surgeries and orthodontics it will come out to about $20k over two years. In Canada the hospital stay and most of the surgeries are covered by provincial insurance, so about 3/4 of that cost is actually for braces + expansion device for SARPE. It's a long and sometimes difficult process, but my own personal calculus lead me to believe it was the best available option given the circumstances. If all goes well I should come out the other end with minimal or no sleep apnea, and as a bonus straighter teeth too :-D There is some really interesting work being done on implantable hypoglossal nerve stimulation devices (https://www.inspiresleep.com/ https://www.inspiresleep.com/) but in my estimation the jury is still out on the long-term prospects of that modality.

stordoff 8y ago

There are also apneas that don't necessarily respond to CPAP/BiPAP treatment. I've been told that I have central sleep apnea -- no effort to breath for up to 30s at a time -- but BiPAP treatment only made a marginal improvement in number/duration of apneas, and was discontinued as it was aggravating other conditions (skin disorder).