Tuesday, October 20, 2009

Did Dr KL tell you what you have?

And it’s Tuesday. Appointment with Doctor L. I’ve got Diane in tow and we head to the office. We arrive and I’m told my appointment was at 9AM this morning and I was listed as a no show. Now, brain jokes about cognitive deficits and memory aside I am positive the appointment was at 2:00. Positive.

Later on I learned that they left a message for me at my work number asking me if they could move it until 9:00am. First of all, I don’t know how they got my work number as I rarely use it and rarely give it out (I use my cell phone) and secondly I never got back to them that this change was OK so they really should not have switched it without confirmation from me. Whatever. I was relieved I hadn’t made a mistake remembering the time. I do harbor a bit of anxiety about issues with cognition.

I’m told they’ll squeeze me in and Diane and I sit around for about an hour. Then we sit in an examination room for about 10 minutes. Again I admire the bamboo floors and appreciate the good use of my insurance dollars.

Doctor L comes in. Dressed to the nines, of course. I kind of like and dislike that about him.

Highlights from the conversation

L: How are you?
J: I’m OK, how are you?
L: Better than you (it was funny).
J: Did Dr KL tell you what you have?
D/J thinking – is this some kind of guessing game? Is there something I haven’t been told about? Fortunately, he’s just referring to the cavernoma.
J: Well, I got a diagnosis in a voicemail. I’ve researched it but I would like to discuss it without.
L: A voicemail? The health care system these days (grumble grumble)
J (thinking) At least I get a call back.
L: You have a cavernoma. It’s in a shitty place. Near the brainstem.

He goes on to explain that surgery would be very, very risky. But, he quickly indicates that it’s unlikely they would do surgery on me. It would be a last ditch effort if it bled again AND along with really bad symptoms.

He goes on to explain that pretty much my life goes back to normal.

Of course I have a million questions (Ok, not a million but I actually did have four printed pages of questions. Diane took notes). Most of my questions are along the lines of limitations, prevention and treatment.

L: We have seen the people who baby themselves are not more or less likely to have another bleed.

As far as I’m concerned that’s good news. And bad news. The good news is I can go back to doing whatever I want. The bad news is there’s nothing I can do to prevent a repeat bleed because if there was, I would damn well be doing it.

L: If you have any more questions, just give me a call.

And here’s the moment I’ve been waiting for

J: Er, you’re kind of hard to get in touch with

L (surprised): I am the most reachable Doctor ever. My home phone is listed.

Jamie explains a little. Diane mentions him going to China without any coverage.

obviously not hearing the part of the sentence that included “without any coverage”
I’m entitled to a vacation!

D: Oh, absolutely. Vacations are great. I just got back from a vacation. It’s just not having any coverage when you’re gone.

L: There are five other neurosurgeons here.

D: Jamie called your office and was told she had to wait until you got back before any decisions could be made.

L: That doesn’t make any sense

D/J: That’s what we were told.

Towards the end of the conversation Doctor L described it as a "freak" that they figured out what it was. It was only diagnosed because the CT scan I had last week was the same as the CT scan in August, yet I could not have had another bleed. It is difficult to diagnose these.

L: If I were to chose something to be wrong with my brain. This, what you have, would be it.

Hm, comforting?

We leave and agree that Doctor L is alright but his office staff is kind of shitty.

As soon as I get home I go for a run.

For the first time in over two months I feel some genuine sense of relief. This is about as over as it ever really can be.

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