Friday, September 12, 2008

A New Hope

I've mentioned before that I have non-restful sleep. Acupuncture can and does help, but less so recently with new practitioners. I have now had 2 sleep studies: eight years ago and eight weeks or so ago. The results from the most recent one were as frustrating as the first - slight airway obstruction, but nothing they'd really do anything about. I snore and get minor apnea on my back. 93% sleep efficiency. Which *I* would interpret to mean I should be 93% more rested than when I went to bed. And I did sleep pretty well and do OK the following day at work with the whole staying awake thing.

But in the ordinary way of things, I'm often as tired when I wake up as when I go to sleep. People say "get up, move around, get going". I do this for work but I get up late almost every day. And I spend a couple hours in a "brain fugue" that I try to hide with busywork. Or if I'm at home, I get up in the morning and need a 4 hour nap 2 hours later. I either miss most of the day or I'm dragging all day. I've tried exercise, I've tried not-exercise. Neither is significantly better. Certainly I don't feel 93% rested, pretty much ever.

Recently I had a week or more of lousy sleep. I use Breathe-Rights on my nose to increase my breathing volume capacity. I sleep on my side so I don't snore or have apnea episodes more than 1/hour. I treat my allergies and use sinus rinse to clear out post nasal drip. I do not have a TV in the bedroom. It's pretty dark. I do have a fan which provides white noise. My bed is comfortable. I've reset my thermostat for improved sleeping. So what's going on?

The nothing sleep result is frustrating because clearly SOMETHING is wrong. So what is it? In apnea, it can get worse when snoring stretches out your uvula or other soft tissues collapse to tighten the airway. I don't appear to have any collapsing tissue, but I DO have a super-extra-ginormous tonsil thanks to mono that wasn't diagnosed for weeks because the med-center at school flubbed the test. It was biopsied at some point to make sure it wasn't cancerous because it does hurt.

I also just looked over my lung function test from the Allergist. It's pretty good. Probably because I'm a singer and swimmer and extremely good at following breathing instructions. But it also mentions "slight airway obstruction". It's noticeable to the machine, but not considered terrible.

While talking with the pulmonologist the other day, I was getting fed up. And we started talking about the tonsil. It is big and ugly. I surrendered my adenoids (which I just found out is a single object) 30 years ago, but they left the tonsils. I'm starting to wonder if my tonsil is *just* big enough to cause breathing obstruction while I sleep. Not enough to wake me up, but enough to make my body struggle. Awake, I can do a manual override. Awake, I have superb diaphragm control. Perhaps not so much in sleep. That and the fact that it is chronically painful (low level pain - like 2-3 of 10 - and chronic pain interferes with sleep make me think that a tonsillectomy is in order.

TMI warning:
If you don't like gross bodily functions, skip next paragraph.

Other tonsil fun. My big tonsil has external caverns which catch crap which turns into unattractive yellow pearl like objects. I just found out these are called Tonsilloliths. I haven't had any in a while, but have had a bunch of slimy proto ones for the past couple days. Turns out this is tonsillitis according to wikipedia. I've been gargling with Listerine, since it's the chlorine bleach of the mouthwash family I keep it around for aggressive disinfection. Weirdly, though, I have actually been feeling really good this week, NOT sick and tired, so I don't know how much its affecting me aside from trouble swallowing and unattractive throat goop, which is thankfully not smelly.

Tonsillitis has focused my attention on the big tonsil though. I'm getting seduced by the idea of removing it. My other tonsil is small and by all accounts healthy. Maybe they can leave that one in. But I'm wondering if this minor surgery could actually help fix me.

Wikipedia also says this, "Hypertrophy of the tonsils can result in snoring, mouth breathing, disturbed sleep, and obstructive sleep apnea, during which the patient stops breathing and experiences a drop in the oxygen content in the bloodstream. A tonsillectomy can be curative."

It makes sense to me that such a minor tweak could make all the difference to my mysterious sleep disorder. It would be fabulous.

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Update: How quickly I go from hopeful to furious. I've now done some websurfing on tonsils and sleep. On nearly every site it mentions "enlarged tonsils are often removed to improve sleep." You don't say.

I've had an enormously engorged, inflamed and chronically painful tonsil for roughly half my life. I've asked better than a half dozen doctors about it. I've seen better than 2 dozen doctors for sleep issues. There was even some overlap. Yet not ONE, until the pulmonologist allowed that a tonsil might constrict my airway, ever suggested, hinted at, or otherwise indicated that removing my giant tonsil could help me sleep. One told me he doesn't remove them unless they're cancerous and mine isn't. I lost half my 20s to sleep related problems, and roughly half of the last year I haven't been doing what I'd like due to exhaustion. This problem has made me ineligible for private disability insurance. And my problem could possibly be fixed with a little open mouthed surgery under local anesthesia????

I wonder if this was my sleep problem as a kid. I even had to be dragged out of bed to open Christmas gifts. I was late to elementary school. I don't know how much is lifelong and how much is post-mono. I've sprained my ankle getting out of bed in the morning. I'm chronically late to work so I always pick jobs with "flex" hours - not so flex that I can be nocturnal though. I had 2 weeks of restful sleep after a successful hernia repair then reverted to normal after the nerves developed neuropathic pain. (contraindicating a tonsil problem, true). It's the only two weeks in my entire life I woke up before my alarm clock and stayed awake.

On one hand, fixing the problem would be thrilling. On the other hand, I have suffered grievously for years. To find out that all my doctors are so maddeningly incurious about sleep and dismissive of tonsils that it never occurred to any single one of them to mention it to me, when it is all over the web, is a little more than I can take in right now. I think that if it works, I will write to every health care provider I can remember and let them know. And try not to call them a dismissive, incompetent ass. Then again, like many other things, it might not work. Or I might need another hernia repair. Or...

4 comments:

azteclady said...

I for one would think you have every reason in the world to be angry--perhaps the large tonsil is not the cause, and taking it out not the answer, but it's unbelievable that none of the doctors would even *mention* the possibility to you.

Here's hoping you find some relief.

S said...

I'd be beyond pissed too. The old saw is that 50% of all doctors graduated in the bottom half of their class... but unfortunately even many of the ones in the top half of their class have times of total incompetence too. So can you find a doctor who will do the tonsillectomy? And if you can, is there any reason *not* to have both removed, as long as you're going through all the fuss for one of them?

Up My Mind said...

FYI, I had a HORRIBLE case of tonsilitis while in the Peace Corps. A case of strep that morphed into tonsilitis, & a round of antibiotics at 4-day (not 5 or 7-day) dosage. I felt FINE after it "appeared" to clear up. No fever, no sore throat. Nothing beyond being very tired. Long story longer, it was EIGHT MONTHS before I go rid of it and gained my energy back. And also developed an immunity to Amoxy.cill.in.

I'd be furious if I was you. It might not be the entire cause of the sleeplessness. But poor sleep makes the body weaker and worse at fighting off illenesses, etc. :(

I'd find a doctor that does tonsillectomies for something other than cancer. ASAP.

{hugs}

CrankyOtter said...

Thanks guys! The thing that really gets me is how dismissive most doctors are of something I complain about as being "nothing" or "normal", and how plainly incurious they are. How can you not be curious about this?

Sometimes you go to specialists that help because they know about that field. But even then, some are problem solvers and some are tool users. If their tool is a hammer their solution is pounding nails. If their solution is electroshock therapy, lots of zapping going on.

I did find a local recommendation for a new tonillectomy procedure that has lower downtime and less scarring they use at UCLA and locally. (with magical "lasers" you know...) They can do it with local anesthetic on adults.

Called the doc last friday and didn't hear back. Turns out their phones went wonky. Called today and they didn't have my message. I'm feeling lots better but still bad.

UMM - thanks for the warning of lingering effects. This thing has been wonky since the mono and probably hasn't helped my overall well being. If one is constantly fighting skirmishes, it's tiring.