Tuesday, July 31, 2012

The medical merry-go-round

Caught in referral hell

It seemed a good idea at the time. Heck, it still seems like a good idea. People did try to help out and some leads were followed. So they turned into dead ends. Whose fault is that? Everyone who offered suggestions deserves thanks.

I prefer to blame the doctors.

Frankly, it's like they're playing a game of keep-away with a friend of mine. However, instead of swiping some short kid's cap and tossing it back and forth over his head, it's more like they're lobbing his medical file to and fro: “Here! You take it!” “Hell, I don't want it! You take it!”

I get it. They can't figure out what's wrong with him, so they ignore him as much as they can (this part is easy, because they are actually very busy people with easier cases to consider) and then try to make him someone else's problem when he gets to be a nuisance. My buddy wouldn't mind this latter part so much if at least someone in the long-running game of tag-you're-it could actually make sense of his situation.

As previously reported, one of my good friends (we go back all the way to the height of personal computer fun, West Coast Computer Faires, and user groups) is suffering from a combination of symptoms that include ferocious migraines, loss of voice, and a strangling sensation of throat constriction. Doesn't sound like fun, does it? Initially it seemed like his lymph nodes were going crazy, but now it appears the swelling and constriction must be from some other cause. His thyroid levels were messed up, but medication to bring his numbers under control had no impact on his other ills (even though the thyroid tests got back into the normal range). It's as puzzling as ever. Here's his most recent update:
I have seen three different otolaryngologists in three different clinics: One at UC Davis, one at UCSF, and one at the Sacramento ENT clinic. No one could find a cause in my throat. I followed up by seeing an endocrinologist at the UC Davis Elk Grove clinic. He ruled out my thyroid causing the problem and also ruled out Riedel’s thyroiditis as a potential diagnosis. On July 26 I saw an allergist at UC Davis and she ruled out allergies as a cause because allergies come and go. She suggested I go back to the UC Davis ENT clinic because the doctor I saw at that clinic said that I should see them again if the problem persists; the allergist said I should see them for voice and swallowing problems. I told her that would be useless because all the doctors I’ve seen are trying to address the symptoms, not the cause.

The swelling continues to grow in several places that have been swollen for a while, and a new area of swelling appeared on the back of my neck in the last week.  I’m starting to feel more pressure and pain on my throat when I lie down, which makes it even harder to get comfortable when I need to sleep. Twice this week I’ve slept for 8 hours at a time only to wake up exhausted. I still have no appetite and I’ve lost nearly 19 pounds since this started 4.5 months ago – I was at 163.8 pounds when I started and I’m now down to 145.2 pounds. I’ve asked my current primary care physician about next steps including a PET scan and a follow-up ultrasound scan. I’m currently looking for a new PCP.
He doesn't mention it, but his PCP's referral to the UCSF otolaryngologist provoked an irritated response from the latter, whose specialty is oncologic surgery; he was clearly irked at being sent a patient with no indications for cancer. The wasted trip to San Francisco was further evidence that his primary care physician is out of ideas and is randomly sending him around, hence the search for a new primary. And for a new referral that finally produces results.

Anyone out there have any ideas? Are you a retired diagnostician with time on your hands and an itch to solve an intractable problem? Everybody needs a hobby!

The situation gets monotonically worse, with neither diagnosis nor remedy on the horizon. What can we do to get this guy out of purgatory?

And please don't suggest prayer.


Jens Knudsen (Sili) said...

Have you tried contacting fellow blogger, Sid Schwab?


He's a retired surgeon, but he may know some blogging diagnosticians.

Zeno said...

Good idea, Sili. Thanks!

Anonymous said...

@Zeno: maybe contact some of the guys on Science-Based Medicine? I know a lot of them aren't out in your area, but they may have some suggestions, too. Dr Harriett Hall, especially.

MI Dawn

Anonymous said...

It sounds like a neurological problem, or maybe a vascular constriction. It's positional, right? So it seems that there might be some pressure on a nerve or blood vessel that exacerbates the dicomfort, swelling, tingling, etc. Could be a blood clot or a neuroma.

Monado said...

TMJ problems?