On the internet, I’ve encountered hundreds of people with the same brain/skull issues that I have. I’ve emailed, facebook chatted, tweeted, commented on blogs. I’ve always been virtually surrounded by those who have experience similar things, who understand the trials and tribulations of Chiari.

Today, for the first time, I met someone in real life with it.

It was just a coincidence. I’ve been helping treat this woman for two weeks now and she mentioned something about brain surgery and it was then that I noticed her very faint scar. We shared stories and compared symptoms. She had her surgery in 1995 and has been symptom free since. I told her my surgery was in 2007 and I kind of left it at that. It’s hard to talk, in person, about the way things are now. It’s even more difficult when you’re supposed to be the health care professional, not the patient.

When I walked out of her room, I felt conflicted. It was sort of awesome to have finally met another person with chiari, to have heard about her struggles and how similar our symptoms were. But at the same time, it was discouraging and a little sad that this woman had her surgery all these years ago and now has no headaches, no neurological symptoms. She’s fine. She’s recovered and normal.

I’m not. And frankly, that sucks.

I have an appointment with my neurologist/pain management doctor on Tuesday. I already rescheduled it because it was supposed to be in my first week of my internship and I’ve been tempted to reschedule again. But I know that the more I push it back, the less chance I have of going. And while my expectations for any success with this doctor are low (which is mostly unrelated to the doctor and more related to the reality I’ve accepted), I also can’t shut that door yet.

I did try the medication she prescribed. I hated it. Hate hate hated it. I wasn’t been able to increase from the original dosage because, even though it’s supposed to raise my blood pressure, all it did was make me dizzy all the time, which is more of a symptom of low blood pressure, ironically. I have never had as much difficulty with unrelenting dizziness and lightheadedness than I had while on that medication and I knew that there was just no way I’d be able to be competent and safe at my clinical if I continued to take it. I didn’t get to give it as much time as I wanted to, but it was somewhat beyond my control, and unfortunate.

I expect to get a lecture from the doctor about not calling sooner, not telling her about the reaction to the drug, and I deserve it. But I want to talk to her, face-to-face about things. I don’t just want to switch to the other medication she had on the list of (2) things that might stand any chance of possibly doing anything for this headache. I want to discuss some articles that a friend found and see if she can run a few simple blood tests to rule out something we hadn’t yet considered.

What I really want is to walk into her office and have her figure out the root of this 11 month old headache and the ultimate answer to it. But, I know that’s not realistic, I know that won’t happen and so I’m steeling myself for that lecture, for disappointment, for another dose of reality.

And hoping that at some point, I’ll get the pain free future that my patient has. That I’ll have a real answer, the kind that closes this chapter of pain and misery.

Share this on

6 Responses to “Recovery and Reality”