Discussions By Condition: Medical Stories

Nine years of frustration at an end (?)...where to go from here?

Posted In: Medical Stories 0 Replies
  • Posted By: bubba b
  • May 11, 2009
  • 11:03 AM

I know a near-decade is a lot to digest in an initial post, so I'll just try to hit the low-lights, so to speak.

Shortly after the turn of the millennium, at age 28, I had trouble initiating sleep. The problem was worse sleeping on my back than side, and worse after consuming alcohol. The crux of the problem was--and continues to be--that I have my airway choked off as I initiate sleep. Since it occurrs at the exact wake-sleep transition as a hypnogogic leg kick, my assumption was (and is) that it's related to muscle tone. Alas, at the beginning, it'd only occur 10% of the time, making it almost impossible to catch on sleep studies. The problem was so severe that I had to leave my job as an airline pilot due to extreme fatigue.

After a time on CPAP, I elected to have surgery--UPPP, chin and hyoid advancement. (This was somewhat difficult to arrange, as my AHI score was only in the low 20's and inconsistent with my level of disability.) Everything was fine for ~1wk, when I felt a "snapping" sensation from my chin...what I later learned was 1 of the 2 plica fimbriata. When the second snapped the next day, poor sleep returned. (As time passed, I believe the hyoid suspension progressively failed as well.)

I was unable to get what I wanted--surgical intervention--because, while sleep was horrible, my sleep studies didn't capture the "chokes" and were largely free of apnea. Along the way, my psyciatrist prescribed Seroquel (quetiapine) and later Zyprexa (olanzipine) that improved my sleep by eliminating the "chokes." Sleuthing by me in the PDR showed both drugs cause "excessive muscle tone" as a side-effect. My aiwary narrowed over the years; as it did, I had to take more drugs, until I got a trach installed that got me off of ~75% of the drugs. (The trach was AMA from my doctors' POV.) Also, I had lowered aerobic capacity from personal baseline--but as baseline was 1400kcal/hr, it took a long time for this to look pathological.

Currently, my symptoms are as such:
1. OSA(?)--was scored by sleep tech in the 30's with trach open (only possible way for me to sleep now) only to have this reset to zero by an MD who stated "trach patients can't have OSA." He said a similar thing about the "chokes" captured.
2. Sleeping Hypoxemia: Desaturation =< 88% for 40% of sample period--perscribed O2 as a result.
3. Waking hypoxemia: recent ER admission required 5L O2 supplementation and hopefully will get me daytime O2.
4. Complaints of cognitive impairment: lessened since O2 supplementation; cerebral hypoxia yet to be ruled out.
5. Two ER visits: nature therof was a. Short of breath when trying to sleep b. HR > 150 in panic response; remained at 120 at hospital admission 2 hrs later; fell <100 4 hrs later. c. O2 necessary on 2nd visit (nadir 87%.)

Currently my diagnoses are:
1. Sleep-related choking disorder
2. Delusional disorder (the delusion in question is disagrement w/ diagnosis...hopefully to be revised in light of corroborating data)
3. Obstructive sleep apnea (at one of the two hosptials I frequent)
4. Hypoxemia (solomnescent and--hopefully by day's end--waking).

The BIG complicating factor is that, as the corroborating data came in, I told the department chair ENT responsible for the sugery, and the following refusal of exploratory surgery, "na-na-na, told you so!" in writing. (Granted not too mature.) He responded by a. terminating me as a patient b. refusing to let any of his subordinates work on me.

My pulmonologist is working with me, believes (I think) me, yet always says, "I'm not a surgeon" when I ask about fixing the problem (which I translate to, "I believe you, but I'm not about to take an unpleasant, yet principled, stand on behalf of your health.")

So, what options are open? The nature of my problem has always been to get worse over time, and I'm not sure how much worse things can get and still be capable of supporting life. I am working at developing a new Dr./patient relationship, but the hospital in question holds a near-monopoly on care in my area.

Supposing I show (untreated) daytime hypoxemia...does that require emergency treatment by a hospital that takes public funding? And, if so, does that requirement extend beyond "Here's a tank of O2...now scram!"

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.