Anyone else here have trach due to OSA but vent b/c of CSA?

[zandurian]

After FINALLY getting a trach in 2002 after all other treatments failed it was supposed to solve everything except - it didn't. Of course it fixed the obstructive apnea but when I complained that I still woke up unable to breathe as soon as I fell asleep my pulmonologist said "What do you mean you still can't breathe? You have the most direct open airway humanly possible now". He finally brought me back in for another sleep study and soon apologized as I also presented with severe central apnea.

The treatment seemed simple at first - he set me up with a smart bi-pap (resmed vpap ii) to deliver a minimum number of unprompted breathes and included a chin strap and nose clip to keep the air from shooting out my mouth and nose (through my uncuffed trach tube) instead of down into my lungs - but I would subconsciously pull off the nose clip off (after falling asleep) over and over all night long.

Back in his office he made a joke "Just seal your entire head with duct tape!" and I'm like "that's not funny" as I was about to lose my mind (again) from sleep deprivation. I got the idea to just put a cpap mask on and seal it off so the air wouldn't come out. The problem there became since there was almost zero airflow through the mask i would start to sweat like crazy under the mask and THAT would wake me up.

Another option was a cuffed trach but that also meant no speaking at all without putting an uncuffed trach in so after struggling to get the cuffed unit in and out and pumping it up ect (which often turned into a bloody mess) I kept searching for answers. Maybe some people would appreciate a permanent cuffed trach as I have a habit of talking too much but I also sang for a living at the time so....

My wife finally got the brilliant idea to set up a Y-connector and feed ait to both the cpap mask and the trach simultaneously. That way a constant direct airflow into the mask kept things cool. It works pretty well - the main problem now being the discomfort of a hose on the neck - not always great turning in sleep and the hose pulling on the trach.

He did tell me it was very rare to have a patient with obstructive apnea so bad as to require a trach and also have central apnea. Just curious if any others here have faced the same challenge?

[D.H.]

Prior to 1980, the only option for Sleep Apnea was to live with it (and eventually die from it), or have a trach.

By 2002, CPAP was the preferred treatment, provided that the patient could tolerate it and it was effective. Since you were misdiagnosed, I have to question whether you really should have had a trach. Have you discussed the possibility of sealing your trach? It may sound counter-intuitive, but the machine might work better if it goes through the intended orifice. Probably you can temporarily seal the trach to test this theory.

[avi123]

zandurian, it's a good thing that D.H. understands your post because I don't.

[ChicagoGranny]

... He finally brought me back in for another sleep study and soon apologized as I also presented with severe central apnea.
... He did tell me it was very rare to have a patient with obstructive apnea so bad as to require a trach and also have central apnea.

What did your initial sleep study show? Did you have obstructive and central sleep apnea? Or, did central sleep apnea present itself only after the trach?