Пост от админа группы UARS. AGGA + CAB
Feb. 19th, 2025 07:04 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
healthy_back https://www.facebook.com/groups/upperairwayresistancesyndrome/permalink/773013983420404/
My treatment has been a great success for me. 3 years ago I was a suicidal disabled mess who couldn’t hold down a day’s work. I couldn’t sleep and I couldn’t stay awake. Now I’m fully functioning and full-time working, able to do sport, travel, socialise, and feel alive again. I know I’ll always be tired because of the neurological damage that’s already been done (I was 33 when I was diagnosed) and because I have genetic Ehlers Danlos causing a dilated thoracic ascending aorta, but I can safely say that expansion orthodontics together with nasal surgery, frenectomy, and CPAP, have given me back my life. I’m a human rights lawyer and I always intended to do advocacy for our cause but thanks to this group I no longer want to. If people suffering with this dreadful illness can’t even be respectful and supportive then I see no point.
I had a turbinate reduction + nasal valve repair and a DISE (under Dr Park) to determine cause of UARS (severe tongue base collapse, epiglottis collapse, and AP palate collapse + tiny airway), he recommended MRNA+mouth taping which helped to correct my bite, stopped the bruxism, trained the tongue, prevents soft palate from collapsing, and opens the airway. It helped fix my sleep a lot together with the APAP, and gave me some immediate relief which I desperately needed. I did use the MRNA for some lateral expansion but not a lot.
Then I moved to AGGA + CAB which was always the plan because my lateral width wasn’t “bad”, but then I asked my dentist if we could add some width anyway (as I’m going though so much I thought what the heck) so he added a MARPE (a type of maxillary expander) as I don’t have enough space or bone for MSE and he thinks it’s too aggressive and not necessary in my case. I got 6mm forward growth with AGGA.
I’m lucky because I have strong healthy teeth and gums and no gum recession - some people are however really susceptible to this. A good dentist should not push your growth beyond its limits and should stop treatment if there are any issues like bone loss or gum recession.
So I now have MARPE + upper CAB. I’ll have lower CAB added for about 9 months and that’s the end of my treatment (apart from a nighttime guard).
My intermolar width is 44mm (from about 36mm) I still mouth tape and use APAP set at 10-14. I don’t feel a huge difference with or without APAP now but I did at first, especially the first year. I choose to continue using it.
I also had a frenectomy (tongue, lip, and buckle tie releases) and have done a lot of OMT. I use a posture pump for my cervical spine which I think is great. I no longer have TMJ or neck/upper back pain and my posture is a lot better.
I’ve tried a lot of different anti-depressants and stimulants, at one point I couldn’t get through the day without stims. Now I remain on duloxetine/Cymbalta only, which I find helps with my chronic pain. I had good results with Wellbutrin/bupropion too but meds are very specific to each individual. Meds of course can also affect your sleep.
My treatment has been a great success for me. 3 years ago I was a suicidal disabled mess who couldn’t hold down a day’s work. I couldn’t sleep and I couldn’t stay awake. Now I’m fully functioning and full-time working, able to do sport, travel, socialise, and feel alive again. I know I’ll always be tired because of the neurological damage that’s already been done (I was 33 when I was diagnosed) and because I have genetic Ehlers Danlos causing a dilated thoracic ascending aorta, but I can safely say that expansion orthodontics together with nasal surgery, frenectomy, and CPAP, have given me back my life. I’m a human rights lawyer and I always intended to do advocacy for our cause but thanks to this group I no longer want to. If people suffering with this dreadful illness can’t even be respectful and supportive then I see no point.
I had a turbinate reduction + nasal valve repair and a DISE (under Dr Park) to determine cause of UARS (severe tongue base collapse, epiglottis collapse, and AP palate collapse + tiny airway), he recommended MRNA+mouth taping which helped to correct my bite, stopped the bruxism, trained the tongue, prevents soft palate from collapsing, and opens the airway. It helped fix my sleep a lot together with the APAP, and gave me some immediate relief which I desperately needed. I did use the MRNA for some lateral expansion but not a lot.
Then I moved to AGGA + CAB which was always the plan because my lateral width wasn’t “bad”, but then I asked my dentist if we could add some width anyway (as I’m going though so much I thought what the heck) so he added a MARPE (a type of maxillary expander) as I don’t have enough space or bone for MSE and he thinks it’s too aggressive and not necessary in my case. I got 6mm forward growth with AGGA.
I’m lucky because I have strong healthy teeth and gums and no gum recession - some people are however really susceptible to this. A good dentist should not push your growth beyond its limits and should stop treatment if there are any issues like bone loss or gum recession.
So I now have MARPE + upper CAB. I’ll have lower CAB added for about 9 months and that’s the end of my treatment (apart from a nighttime guard).
My intermolar width is 44mm (from about 36mm) I still mouth tape and use APAP set at 10-14. I don’t feel a huge difference with or without APAP now but I did at first, especially the first year. I choose to continue using it.
I also had a frenectomy (tongue, lip, and buckle tie releases) and have done a lot of OMT. I use a posture pump for my cervical spine which I think is great. I no longer have TMJ or neck/upper back pain and my posture is a lot better.
I’ve tried a lot of different anti-depressants and stimulants, at one point I couldn’t get through the day without stims. Now I remain on duloxetine/Cymbalta only, which I find helps with my chronic pain. I had good results with Wellbutrin/bupropion too but meds are very specific to each individual. Meds of course can also affect your sleep.