Tuesday, September 18, 2007

"Weird-Ass Diseases" and Mike Rowe

I had my appointment with my pain man today. He is wonderful, very compassionate and honest. First and foremost he wanted to know what happened with my trip to the neurosurgeons in New York. I told him he was right about the EMG test the local hospital did being completely wrong; I said NY redid it, and strongly suspected Thoracic Outlet. He immediately went, "Oh, no no no, you don't have Thoracic Outlet. There are two kinds of it. There's functional, and true. Functional, it's fine and people don't have to do anything. With true, it's really rare and there's a problem with the artery and diminished pulse in the arm."

I looked at him and pointed and went, "THAT'S the one!"

His jaw hit the floor. He said I HAD to be kidding. I told him about last week's appointment with the cardiothoracic surgeon and not being diminished in the arm but have complete and total loss of pulse, Doppler confirmed, the vascular doc and chest CT.

True to his nature--honest, blunt, but always willing to stick with his patients--he just shook his head and said he was just shocked I had this, that "lightning struck" me or something, that he wanted to check his books because although Chiari is fairly common, a "TRUE" (arterial) TO is very rare and he's sure there is no documentation of a patient having both combined.

My favorite quote of today though is when he said this was going down in the "Weird-Ass Diseases" collection.

Sigh. I was given a stack of prescriptions, some pain, some anti-seizure; an order to check my liver function because of all the stuff I have been taking for so long. I'll do the liver panel tomorrow. He's adding (the painkiller) Dilaudid a few times a day to take at the same time as the Zanaflex, a titration schedule to get off Topamax after the last couple years, a titration schedule to add in (anti-seizure med) Depakote. The Topamax will take a couple of months as I'm on such a high dose and I have insurance issues, and the Depakote will take 3 weeks. I plugged in the titration schedules on my PDA because one look at all the varying info, changing every few days, and my brain about had a spasm. I'm just glad at least my other meds stayed the same. I really needed that painkiller change though. Fingers crossed for pain improvement.

Tonight my show is on, Dirty Jobs. I pretty much spend my days baby-sitting my recliner. I read a lot, and help newly diagnosed patients who are sent my way online, but as for the quiet time, the only thing on tv I watch is Dirty Jobs. It's the first show I have watched since Quantum Leap went off the air--ha! Ok, I watched an episode of FutureWeapons this year but all of my friends know it's because my dear brother was on it! You can't beat that! Dirty Jobs though, Mike Rowe just gets me in stitches, laughing until I can't laugh any more and my cheeks hurt all night. In a life where laughs can be few and far between, I take great joy in Mike's sense of humor and new shows on Tuesday night on Discovery Channel (and of course I can't miss daily reruns, no matter how often I've seen them).


  1. Hmmm . . . I don't think I've ever seen that show. Usually when I need a laugh, I turn to some traditional "Conan O'Brien Therapy".

    That's nice "Weird-Ass Diseases"! He said lightning struck? What about the old cliche of the zebra?

  2. You never heard a doctor say this:

    "When you hear hoof beats you expect to see horses not zebras."

    I heard that a lot from my docs, and even saw it on the awesome fictional medical show "House."

    What that quote means is, in diagnosis, docs tend to go with the easiest, most common problem before they would suspect anything rare. In my case, I went through 2 years of several misdiagnoses by a dentist and an otolaryngologist. The most common misdiagnosis was that I had a sinus infection. Because the effects of my cancer, at that time, really only looked like a sinus infection.

    One of my great doctors in Denver kept saying, "No . . . it couldn't be that . . . but if it is, I'm going to have to write a paper about you!" When it did turn out to be that, thanks to his persistence in doing the right tests on me even though he knew how rare the diagnosis he was looking for was, I think he did write a paper on me. I LOVE the idea that my case is probably going to make medical textbooks! Then, when I got to Houston, my miracle worker, I mean, the plastic surgeon who rebuilt my face after they cut out my cancerous jaw took a ton of before and after pictures--for a textbook! I am so happy!

    PLEASE link to me! I am doing the blog thing to have people read and hopefully enjoy my thoughts and wacky life. Sadly, it seems hard to keep readers.

    Anyway, I have a 13 hour day at school today, so I probably won't get to touch my blog. But the next time I do, I am going to put you in my links, and clean up some of the dead links I have.

    Have a great day!

  3. Ooh Dirty Jobs is a favorite of mine too, what a character!

    Love you Keesha!

  4. Anyone who loves "Quantum Leap" AND can handle all those medicine titrations is okay in my book! : D

  5. Hi! I just found your page. I have EDS and Chiari as well. You are the first person I have run across who also has both. Glad to hear you seem to have a competenct doc...they can be hard to come by!