Sorry! Try nikk @ getfractals dot com. Changed my bio recently and forgot.
That's pretty insane that you had that surgery; I heard that's one of the most intense treatments they have. Was it specifically for the sleep apnea?
I am very familiar with the jaw falling open/tongue sliding back. I tried a headstrap + mouth taping + mouth guard combo for a while which was often able to keep the jaw in place, but it's finnicky, and sometimes slips, causing the jaw to fall back in deep sleep. Another option I tried were the 'tongue retainers', which pull the tongue forward, but, from the literature I've read, they may or may not prevent the base of the tongue from collapsing backwards. Very subject dependent; I didn't have good results, personally.
Anyways, for my personal case, it turned out that I had enlarged lingual tonsils which were pressing on my epiglottis and causing it to collapse back into my throat. My epiglottis was 'floppy' and collapsed over the airway particularly in REM. The treatment was a lingual tonsillectomy. After that treatment I still didn't feel better and had another endoscopy with a different surgeon which uncovered that my soft palette was collapsing; the treatment for which was this, [0] a treatment which essentially sewed my soft palette down and removed my palatine tonsils.
The whole thing was a nightmare. I'm 5'7 140lbs so maybe 4-5% body fat, in shape, 27 y'o. Outwardly in shape, basically. I'd go to doctors telling them I was not able to achieve refreshing sleep, and they'd tell me I was either depressed or had some psychological disorder. Around four our five dozen doctors told me this. My cries fell completely on deaf ears. To confound things even further, I had four in-lab sleep tests and around 5-6 at-home sleep tests, almost all of which were completely absent of sleep apnea. When pushing for another endoscopy/surgical remedy, one surgeon said, "why would I operate on you? you sleep better than I do." I wanted to cry; so frustrating.
The practitioner that you choose matters; as there are relatively few in the world who understand the complex anatomy of that area and can suggest the particular surgical treatment that's most likely to relieve your symptoms. You'd be surprised to find out that most sleep apnea surgeons provide the same blanket surgery, the UPPP, to all of their patients, independent of the patient's particular problem areas/issues. Not to say UPPP doesn't work for anyone, but, it only addresses correcting a very particular subset of problematic tissues, when the patient may be having collapse in an entirely different part of their airway. The over prescription of the UPPP and most doc's reluctance to attempt to properly diagnose a patient's particular issue is a major reason as to why surgery is often seen as ineffective in sleep apnea treatment and cpap is still the 'golden standard'. I think this will change as cutting-edge research continues to slowly disseminate through the field; but it will probably be a long time before your average sleep surgeon becomes versed in cutting edge techniques.
I am absolutely convinced that Dr Eric Kezirian in Los Angeles saved my life and couldn't recommend him more highly. He has a blog with tons of useful information [1] if you're interested. Even better, I don't think there was a single email I sent him that he didn't respond to within an hour. It's a crazy dichotomy to have an expert surgeon who is also highly available and helpful.
That's pretty insane that you had that surgery; I heard that's one of the most intense treatments they have. Was it specifically for the sleep apnea?
I am very familiar with the jaw falling open/tongue sliding back. I tried a headstrap + mouth taping + mouth guard combo for a while which was often able to keep the jaw in place, but it's finnicky, and sometimes slips, causing the jaw to fall back in deep sleep. Another option I tried were the 'tongue retainers', which pull the tongue forward, but, from the literature I've read, they may or may not prevent the base of the tongue from collapsing backwards. Very subject dependent; I didn't have good results, personally.
Anyways, for my personal case, it turned out that I had enlarged lingual tonsils which were pressing on my epiglottis and causing it to collapse back into my throat. My epiglottis was 'floppy' and collapsed over the airway particularly in REM. The treatment was a lingual tonsillectomy. After that treatment I still didn't feel better and had another endoscopy with a different surgeon which uncovered that my soft palette was collapsing; the treatment for which was this, [0] a treatment which essentially sewed my soft palette down and removed my palatine tonsils.
The whole thing was a nightmare. I'm 5'7 140lbs so maybe 4-5% body fat, in shape, 27 y'o. Outwardly in shape, basically. I'd go to doctors telling them I was not able to achieve refreshing sleep, and they'd tell me I was either depressed or had some psychological disorder. Around four our five dozen doctors told me this. My cries fell completely on deaf ears. To confound things even further, I had four in-lab sleep tests and around 5-6 at-home sleep tests, almost all of which were completely absent of sleep apnea. When pushing for another endoscopy/surgical remedy, one surgeon said, "why would I operate on you? you sleep better than I do." I wanted to cry; so frustrating.
The practitioner that you choose matters; as there are relatively few in the world who understand the complex anatomy of that area and can suggest the particular surgical treatment that's most likely to relieve your symptoms. You'd be surprised to find out that most sleep apnea surgeons provide the same blanket surgery, the UPPP, to all of their patients, independent of the patient's particular problem areas/issues. Not to say UPPP doesn't work for anyone, but, it only addresses correcting a very particular subset of problematic tissues, when the patient may be having collapse in an entirely different part of their airway. The over prescription of the UPPP and most doc's reluctance to attempt to properly diagnose a patient's particular issue is a major reason as to why surgery is often seen as ineffective in sleep apnea treatment and cpap is still the 'golden standard'. I think this will change as cutting-edge research continues to slowly disseminate through the field; but it will probably be a long time before your average sleep surgeon becomes versed in cutting edge techniques.
I am absolutely convinced that Dr Eric Kezirian in Los Angeles saved my life and couldn't recommend him more highly. He has a blog with tons of useful information [1] if you're interested. Even better, I don't think there was a single email I sent him that he didn't respond to within an hour. It's a crazy dichotomy to have an expert surgeon who is also highly available and helpful.
Anyways I hope you find relief.
[0] https://sleep-doctor.com/surgical-treatment-overview/palate-... [1] https://sleep-doctor.com