Hello,
I will tell you about what I went through before surgery. It was 1990 Sept. I was being doctored out of the minnesota epilepsy group And the group had a floor in United hospital in St. Paul. So After talking it over with my Doctor...Dr. John Gates,We both decided that he needed me to go to the epilepsy ward in the hosp. to have an E.E.G. For a week or more. It ended up being a mothe where they weaned me off my meds and recorded my siezures and as they were doing that thay also were giving me differents test like the wada test, MRI,Cat scan and exrays, and the mmpi ( i think that is what it was...)It a phsycological test where you have to answer over 200 Questions. (boy I hated that test!) They let me get out in October but they wanted me back in 2 wks as they wanted me to have a grid put on my brain. They did 3 weeks of grid work and on the day of my surgery my doctor came in the room and said "I am sorry to tell you that the surgery has been
cancelled." I had family and friens in the room waiting for the surgery so they all heard that...The Dr. wanted to tell me why but he wanted the people to go. But I said no tell everyone why as I knew I was going to be a mess if I was alone. Well the reason was that my left side wouldbe compramised as far as Dragging my leg And my arm would be usless and I would drool. Talk about a hugh dissapointment!
As I left the hosp. my doctor told me that there was a new surgery that he and my surgen needed to be taugh on how do it and when they got done he would call me. Well he called me in April of 91 and said come on in for a bit more mapping and other test and we will do a subdural peel. Well I did and I had the surgery and after surgery was done and I was awake he told me that they were not able to do the middle part of my rt temporal lobe as I had a hugh nerve running through it. So he said the siezures might decide to jump over that nerve and I would have my siezures again.
I was siezure free for a motnh and then boom! they came back but without my aura or with out the excrutating pain or vomiting.
Now here is the really sad thing...that I had found out the last 2 yrs...the siezures that I was having were psuedo siezures and not epileptic ones! A blessing but also a curse as I had to see an epileptic phsychologist who then taught me how to reconize the psuedo siezures and how to teach myself not to have them.Well It worked until Idecided they have stopped so I don't need to keep a journal and I could just keep my emotions in check...again. It worked for a while infact a yr but then my siezures had change again and they put me in Barns Jewish hsp. and after the 48 hour EEG. my doc told me they were psuedo siezures and not epileptic ones again!.
Since I had gone through this before I knew how to get rid of them...and I did.They took me off of 3 of my epi pills and only put me on one. Now I am able to stop them from coming or stop them when they just start.My epi doc told me in 6 to a yr she will let me have my liceance to drive! My med. which is carbatrol is stopping my epileptic ones.
I never knew about psuedo siezures till I was told I had them. But thats another part of my life.
Trish (jiminycricketblue)
--- On Sat, 8/1/09, CBI <cbicook@yahoo.
From: CBI <cbicook@yahoo.
Subject: [epilepsy] brain surgery
To: epilepsy@yahoogroup
Date: Saturday, August 1, 2009, 5:43 PM
There has been a lot of reference to those having surgery. Can someone(s) explain what makes a person a candidate to have surgery? Is it the number of seizures one has, the location in their brain that they begin, inability to gain control using medications or what? I keep reading about these surgery's and don't know where to start to find out if it would work for me. How does insurance cover these? Is it considered elective? Is it beyond experimental. What are the risks? Could you worsen the level and type of seizures you currently have? Do you need to be at a major medical facility to have this surgery or are more and more hospitals capable of performing it?
How much time must one take or have available to complete this process and continue back to work?
I know these are a lot of questions. I'm sure there are some good WEB sites to explain it and I confess I have not looked at them yet. I'd like to get the group's opinion and recommendations on this process. Thanks.
CBI
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