Brain Surgeon Say What?

Yesterday was my great big appointment with the neurosurgeon to decide if I should be getting a shunt to keep the pressure in my head lower.

The idea was that the lumbar puncture I did on 14 April would see if my pressure was still high and also to see if I got better afterwards. Did it help my headaches, vomiting, passing out, tinnitus, vision loss, all that fun tumor like stuff.

And the answers were all yes, my pressure was high and I did indeed feel better after the tap. My vision got better, my optic nerves were flat, I could walk a little farther without throwing up, I went two whole weeks without throwing up or being nauseated all day, which is really just as annoying.

I didn't have high hopes for anything this doctor would say, I don't trust him and I thought he was going to say he didn't know what to do but I did expect he would lay out the choices. I thought he would say okay, you can expect this if you do this and this if you do that. But he didn't. He asked how I was and how my vision was and then he said it was all up to me but he would think twice before putting a piece of plastic in his body. No doubt I smirked here because I immediately thought of a tampax applicator and he got kind of pissy and said that a piece of plastic is exactly what a shunt is and then he sat there staring at me like we were having a stare down. It was decidedly queer.

He finally said maybe I should have serial lumbar punctures to keep the pressure down but he would do the surgery if I wanted it. And that he would do it if I were going blind. Now you know that this is a recurring theme that I just don't understand. So here I lost my temper and asked what the hell is so holy about vision?

I said that I don't see why one of your five senses is so much more important than the ability to walk around without passing out or getting through the day without throwing up twenty-five times or being able to walk more than a block or holding down a job and he said he didn't know where I was going with this!

This is the second time this week someone has said that to me when I just said where I am going. My question is why is vision so important compared to everything else and he said that
"we like to save the vision when it's possible" and he said it in the most condescending tone I have ever heard.

That's when I said I don't see what is so fucking important about eyesight when stacked up against everything else and he got really defensive and said I hadn't complained about the rest of it, which is ridiculous because I certainly did.

Oh yeah, get this, he said that I could have post meningitis syndrome but I don't have hydrocephalus. Okay now hydro means water and cephalus means brain right so why does this thing I have not count in that same ballpark? They talk about the PTC at the NeuroHydroDynamics conference, right?

He said PTC patients don't have more spinal fluid. And that they don't have less space. They just have more pressure. Why? Why? Why? How do you get increased pressure with the same volume of water and the same space? Is this magic? He said that it's just increased pressure and nobody understands it.

Chris said that didn't make any sense and you can't have increased pressure like that and Dr. Whatever said that pressure is an energy. Then he said a bunch of stuff that convinced Chris he was just making it up and they stared at each other like two angry dogs until I said okay I was done.

Then the doctor had me wait while he dictated his notes before I could get my films back. Not that he looked at my films, he sure did not, I guess he just gets off on making people who piss him off wait.

I don't remember if I blogged about it but on our other visit some family was screaming at each other in the lobby about how awful the doctor and the office is. I'm just sayin'

So end result, Dr. Neurosurgeon with years of training and practicing says I should decide what's best for me and nobody is holding a gun to my head. (really? I hadn't noticed.)

My decision? I got my MRI back and I left the office and I don't plan to return. I live in an area with excellent hospitals and doctors. There is no reason for me to have to put up with a jerk of a doctor who already said that when they do these surgeries they hand them off to the residents. Fuck him. I'd rather do surgery on myself than let him anywhere near my head.