Dear Reader (I've always longed to write that),
Thanks for sticking with me and my medical posts. This feels jumbly due to headache.
Today's note: always get the best doctor possible, one with good research skills, because you never know when you'll need the best of his or her skills, sometimes in a hurry. For complicated problems, get someone who teaches at the medical school or publishes extensively (and who knows what they're doing, is minimally invasive, etc.).
Doctors do a lot of work behind the scenes. When I thanked the doctor for his time, saying I knew it blew a hole in his schedule for today, he said he had to talk to medial experts at University of Chicago and the local medical university to determine the best way to test to get accurate results and avoid a bad adverse reaction while still also determining if I'd have an adverse reaction tomorrow. And he had to cull the periodicals as well, though he found little and what was suggested was insufficient--he said he didn't want to be cavalier in his approach because of my previous severe reactions. It's nice to be believed without having to do a "I told you so" later. He knows my history.
The allergy testing took 4 1/2 hours! My husband had to volunteer at the elementary school for 4 hours rather than 2 because I had underestimated so much (we're helping with the school bookfair). I feel badly about that since that's a half day of missed work time, and he'll be missing tomorrow to drive me. It's amazing how much he gets praised for helping out/volunteering (because he's male rather than female)--most of the women volunteering are also taking time off from full-time jobs. It is good for other dads to see him helping out--they may get the idea they can help out, too. :) Most of our volunteers most of the time are women who are already overcommitted/stretched too thin.
Oh, yes. The allergy testing took 4 1/2 hours. I thought I'd have quick skin testing. No. First skin testing, then injection of steroid starting at 1:10,000 dilution up to 1:1 full dose, waiting 30 minutes between injections as we got close to the full dose. About 10-12 pricks or injections altogether. And it took time to dilute all the solutions. The skin swelling with 1:1 was slightly larger than the control with histamine, but no systemic hives or reaction, and it's more of a dose than I'd get systemically from going locally into the epidural space. I got a migraine 3 hours in, and he asked what I take and was going to give me a drug sample, and I said, "I don't take anything." He looked surprised. I explained: "It's minor compared to the back pain."
I realized again why anesthesia is sometimes helpful with spinal epidurals--cortisone is a thick, gloppy substance, and it really hurts going into the skin compared to other injectables. Putting it into a blown disc is more painful than putting an epidural into a laboring woman with a normal disc. Still, I know several people who have had the injections without anesthesia. Some of them said it was the most excruciating experience they'd ever had, though brief. I am wondering if my doctor does the anesthesia because he doesn't like to see people in pain or if he is overmedicating for something that, though painful, is brief. Or if he's had someone move a lot. He doesn't ask people if they'd like anesethia or not, though I guess he might be negotiable. My grandmother said yesterday that her friend's husband had this done and it was terribly painful. I told her I'd be under, and she said, so was he. But he remembered it and still felt it. Thanks, Grandma. It's not like I was worried or anything. Sometimes sympathy can backfire.
The dr. also said said he can desensitize me to sulfasalazine (yippee!) so I can take it rather than methotrexate or embrel, but he thinks that I'd feel like crap on it because of the side effects. Might be worth a try, though, since I feel crappy from pain. It would be an expensive experiment to find out if I feel worse: 1. with pain and without sulfa, or 2. with sulfa and without pain. It's something to investigate/research at some point.
I keep forgetting to tell the spine doctor that I'm an understater. When I have a problem, I really mean it and it's probably worse than I'll say because I don't want--Procedures (I give "it's only a flesh wound" kinds of denial statements all the time). The allergist recommended I use my asthma inhaler right before the sedation tomorrow to avoid the propofol problems. So we're good to go tomorrow. As long as I don't confess my blogger id...