Treaments... - Epilepsy Message Board

TwstdWhsprs60 · 04-17-2006, 05:52 PM

When I went in for my EEG last week, my neuro told me I'm not a candidate for ANY type of brain surgery, as I have significant slowing on the right side of my brain, and any surgery could make it worse (On the bright side, he didn't term it "a big mess" this time.

I've had testing for VNS before and had a few different opinions, most on the side that the scarring on my brain may not be what causes my seizures...I did have a telemetry test done a few years back, but had a 103 degree fever at the time, so couldn't get conclusive results with it...All my neuro will say is that he deals strictly with VNS and medication juggling, and quite honestly, I'm tired of the juggling, since he's told me more than once that the medicine won't help anymore.

Any suggestions would be greatly appreciated...

neurowreck · 04-17-2006, 08:31 PM

A new neuro??? Med juggling is often necessary, but it's also got to end at some point, and something more definitive and consistent done. I'd want another opinion.

Travis from MN · 04-17-2006, 10:36 PM

Ask your Doc for A refrence for a second opinion.

With your recent tests, and any MRI's (hopefully!) along with your history; that should be enough material for an unbiased John Doe doc to render an opinion.

Remember, VNS *usually* allows a patient to REDUCE medications somewhat. They still must maintain medications after the VNS is activated. I'm sure there are other cases on the books where reduction is greater. Those that I know were able to reduce as much as 30% over 3 year total time span (NOT all at once); MORE after other factors came into the picture. I'm talking of people I know personally. Not every VNS patient may be able to reduce medications; but typically patients can depending on their case, VNS settings, seizure patterns, and medications.

A third case I know it seemed his was failing to help at it's current setting. Unsure if he was taking his meds properly or not. Housekeeping had to limit his windows opening; he almost fell out (thank the powers that be the screen didn't give way 20 stories up!) by the time we got to his unit we were able to coax him off the window ledge inside of the apartment. He was pushing against the screen it was bowing (talk about wanting to run and grab somebody and knowing you have to be calm).

The drop of meds case was very heavially medicated to begin with, so the reduction, along with help from Zonegran (weight loss) helped in reduction of medications due to body mass reduction that Depakote added on years earlier.
(when you drop weight you usually have to reduce meds or you'll become toxic)

--Travis

TwstdWhsprs60 · 04-17-2006, 10:58 PM

Heh...I know all about the toxicity I've lost three pounds in the last month or so...Problem is, every time I get ligned up for a second opinion, my neuro gets upset...Like he's the all mighty God when it comes to seizure treatments, yet I'm low on every single bloody level that I can be low on. There are times when I want to drop kick him into the nether world!!! I moved into a new area, so should be getting a new nuero soon...But in the meantime it SUCKS!!! He doesn't know what the HECK he's doing, as I said in my last post. I just want something...Definite. I had a seizure last night where I came to and started talking to my fiancee about long distance...I think I thought he said something about it, and according to him I could only keep one eye open. The other one would open, but only partially and it took a while for that to happen. Usually I'm completely coherent...But lately I seem to be getting worse. And I'm afraid to call my neuro about it, for fear of what he'll do, since the last time I did, he didn't remember what he did with my medicine, or anything else for that matter. I'm terrified, here.

neurowreck · 04-18-2006, 11:25 AM

An arrogant doctor is the most dangerous kind...find someone with a focus on patients, not their own ego.....it's your body, and the doc works for you. You can 'fire' whoever you want.