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Joined Dec 2014
Joined Dec 2014

I had 2 strokes/TIAs even with an ASV+oxygen and klonopin and am handicapped. I was hoping to become an Md/Phd and study some pure math. My strange and vacationing ENT surgeon is advising that I go back to ASV since he thinks I have centrals and no OSA. This contradicts the sleep studies showing mixed apnea from Ultimate Health Sleep in NY but agrees with the SD card data from the Phillips ASV on Sleepyhead. I still had heavy fog and couldn't work or study on ASV+oxygen even with trying to increase sleep continuity which helped with klonopin and trazodone for the 0.1% stage 3/4 sleep on the sleep study. I do have 40% carotid ICA stenosis is there an association with central apnea with those O2 sensing carotid bodies? The sleepy head software on the Phillips SD card showed no OSA events only clear airway and hypopnea events. But the sleep lab in NY showed OSA+CSA mixed apnea with a desaturation of 65%. The sleep neurologist at Columbia said I had complex asthma and he put me on gabapentin to increase stage 3/4 and advised me to see the Columbia sleep pulmonologists but they didn't take my insurance. I've seen many many pulmonologists outside Columbia and don't see any hope to restore my brain function after 2 strokes. So maybe it is dangerous to be on trach even if the oximeter shows normal O2 readings? I've been suffering on the regular and fenestrated shiley 8mm for 2 months and I just feel really weak and exhausted and I can't understand eevn short sentences. I don't know if I had a stoma button on a size 10-12 trach if it would make a difference. Trach seems a bit better than sleeping without the ASV.

I feel good without the trach in with an open stoma which is larger than the 8mm shiley. When the trach is put in I instantly feel my nose clog up. I don't know if a 10-12mm open stoma is like a skin-lined trach and would help?

I guess my only hope is these experimental devices or seeing another pulmonologist neurologist. The ENT on sleep endoscopy found my soft palate was collapsing up into my nose. https://myapnea.org/blog/complex-sleep-apnea

I felt the sleep apnea beginning to cripple me with the onset of adult asthma.

Yes I've heard from one other patient that trach patients have central apneas and they were bedridden adjusting to the new airflow to the brain for months. They told me that they could breathe better on a stoma button.

I'm surprised that I'm still this weak impaired after 2 months after the surgery. I've been weak and have been bedridden. It's difficult to understand simple sentences and I get exhausted from simple talking. I also had my life destroyed by 2 strokes and a TBI. I'm on a fenestrated shiley 8. I'm really wondering if I switched to a different trach if I could breathe better or maybe had another operation and switched to a 12mm.

I'm really worried that I'm being brain damaged on the trach since I'm weak and can't understand simple sentences and things seemed better on the ASV. the difficulty understanding sentences may be partly due to the 2 strokes I had but it seems from sleep apnea since I had that before the stroke.

I'm not sure where this temporary central apnea idea/theory comes from and if it's true.

I never had sharp clarity on ASV except for about 3 days. I heard from 2 people that they had better brain function and were happy with their trachs but the improvement happened 6-9 months after the operation. It seems unusual for it to take so long. Wouldn't an improvement in blood oxygen and sleep apnea reduction be felt immediately?

there seems to be a theory that centrals are also caused by frequent sleep awakenings which alter the body's O2/CO2 sensing. a doctor told me that centrals can be treated by increasing sleep continuity.

anyway I'm becoming more skeptical about trach after 2 months on the shiley 8mm. I do have asthma and am 185 pounds so maybe I'd feel better on a size 10/12.