Wednesday, June 30, 2010

Dr. Nu, I Hate You

Dr. Nu, I Hate You
Dr. Nu, I Hate You
Dr. Nu, I Hate You
I Do, I Do, I Do, I Do
I Do, I Do, I Do
---Dr. Nu, Martin Luther Lennon (2000)

Those folks that know me well know that I've been battling a mysterious, ill-defined medical problem for the last five years. It's a problem that affects my neck, sinuses, ears, jaw and throat to varying degrees -- I know more or less what happens, I just don't know exactly why or what's a cause or an effect. It affects my hearing, my ability to sing, and sometimes my ability to breathe. From 2005-2008 I went to about two dozen doctors of various specialties, had three surgeries, and generally became fed up with the diagnostic abilities of the entire medical system. The longer I lived with this thing and the more I was able to track down what it was, the less the doctors actually listened or believed me, until it got to the point where this was the standard exchange:

"What seems to be happening is this, this and this," (me)

"What you're describing is medically impossible," (doctor)

"Well, that's what it feels like. Give me a better explanation." (me)

"I don't want to argue with you..." (doctor)

I finally shined doctors entirely, decided to ignore everything a doctor ever told me, and just focused on doing what my body seemed to respond well to. And guess what? I got a lot better. I still had to spend a lot of time managing the problem, but it became a nuisance to work around rather than something that was ruining my life.

So about six weeks ago I started getting massive drainage out of my left ear. The whole thing had started with an ear infection that didn't get treated, and one of the theories of mine (not the doctors', because they were never very good at diagnoses that actually fit the symptoms) was that the infection had gotten holed up in some obscure place around the ear and never got out. Now it looked like it was getting out, which was good, but it did require me to go back to the doctors for antibiotics and try to explain the whole damn saga again. I did get the antibiotics, but the drainage went on for three solid weeks before it finally stopped. By that time I'd gone through the usual course of events with them: initial optimism, then doubt, then that glazed look in their eyes as I told them more about the problem and they referred me to the House Ear Clinic ("the finest ear specialists in the country" who did a craptastic job treating me in 2005 and by refusing to believe there was an infection were one of the main reasons the whole thing snowballed), or the UCLA TMJ Clinic to get further evaluation.

I had always had UCLA's TMJ Clinic in the back of my mind as a place that MIGHT actually get to the bottom of the problem, since they're supposedly used to thinking out of the box, but I booked the appointment with a great deal of trepidation. Just thinking about trying to explain this to doctors stresses me out. It always goes pretty much about the same way:

1. The doctor asks you what you're there for. Since the problem extends over five years, a whole bunch of crazy symptoms, and things that correlate that I already know the doctor won't believe have anything do with one another, it's nearly impossible to get it down to a nice little soundbite.

2. You try to explain it as much as possible. The doctor interrupts you with a few questions, gets a dubious look in his eyes, then cuts you off at about the three minute mark.

3. Physical examination, or a checklist. The doctor has his or her usual shtick that they go through.

4. "Everything looks OK except ____________." The doctor then fixates on the one thing he sees that is wrong, and offers up a preliminary diagnosis based on that one isolated symptom. At that point he starts talking about a test for this one thing, or referring you to someone else that specializes in that. He will at no point attempt to correlate that to anything you've described yourself, nor will he accept that any two symptoms that you have described are in any way related to one another.

5. I shoot down the doctor's theory as something I've already looked into and ruled out, and give him a few more factoids to try to get him back on track to what I've come in for. The doctor starts to get that glazed look in his eyes.

6. The doctor basically says he can't treat anything he can't see, and everything he sees looks fine. You ask how you are supposed to proceed. He says dubiously that there's this other doctor you could see, and they might be able to help, but there's basically nothing he can do.

I'm posting this because this is exactly what went down today at UCLA. I wonder if these guys have any idea how similar they all are, how they all have the exact same myopic approach to a problem, how little information they actually gather, how much they will rely on tests and personal observation without giving the patient report much thought at all, and most of all, how little imagination any of them actually have. I understand all the reasons for this -- honestly, I do -- but it's like each one of them thinks they invented the wheel. I actually told the guy today, dude, you guys are all the same. I've been down this road already. I need an investigation, a diagnosis, some thought put into what would account for all the myriad symptoms I've tried to lay before you. What I got was a shrug.

When you deal with something for a long time, you really get tired of it. Not just living with it, but talking about it, having your friends roll their eyes any time you talk about it (and who can blame them), but even more than that, you feel like everyone is judging you for not having taken care of the problem already. "You STILL are having those problems?" someone will say, and I know they're thinking I'm one of those cranks that won't take care of themselves.

Well, I tried, repeatedly, and I never had significant improvement until I started abandoning, even ignoring, doctors' advice. Because the fact is, I have met very few doctors who are worth a damn diagnostically. They're great at setting bones and prescribing antibiotics, but they are piss-poor detectives. I might try eastern medicine at some point, because systemic approaches have worked really well, but I have no further plans to see any western doctors for this problem. It has been a waste of time and money and more than that, I've gotten much healthier on my own than I ever did when I trusted them. And I've been on a particular upswing the last few weeks, so who knows, maybe I'll take this thing out on my own? Screw 'em.

Whenever I hear of a friend that has a non-specific condition that they're trying to track down, I always wince inwardly, because I know that, like most sensible people, they will lay the problem before their doctor and trust them. As far as it goes, that's fine. But I also know that for far too long, if their body tells them one thing and the doctor tells them something else, they will keep trusting the doctor. And I have learned that is a bad move, and sometimes, a fatal one.


  1. I did have a acupuncture treatment for a thigh problem that was going nowhere.

    I don't know if it will help you but it cannot hurt. Its based upon energy flow.


  2. I might try it again, but I did acupuncture (along with a whole bunch of other things) back in '05 and it did absolutely no good whatsoever.

  3. Most likely then it will keep on doing no good. I will keep an "ear" out.

  4. This happened to my mom. She went to the doctor in 1998 with some bizarre symptoms (including an insatiable hunger for shaved/crushed ice) and the doctor was certain it was anemia brought on by menopause, and prescribed treatments for this for years. Turned out it wasn't that at all, in fact they were all symptoms of pancreatic cancer. It wasn't diagnosed properly for another five years (and a trip to a different doctor), only six weeks before she died.