Considering brain surgery

[CQ:)]

CQ, must be a unique experience waiting while a whole team of surgeons decides your fate. =P I'm glad only one team member was repulsive to you, LOL! It sounds like for you they decided rather quickly--the data must have just flowed out of you while you were there, haha!

Where I had my surgery the team of specialists who are part of the epilepsy program I was through for my surgery had their meetings every Friday morning in which they would decide if the patients in for the monitoring were candidates for surgery.
I did spend the morning they had their meeting wondering what the decision would be & when the epitiologist came to see me I was nervous well as excited lol.

As I already mentioned I met the epitiologist in June 2010 then once he told me he thought I was a good candidate for surgery he put me on the list for their epilepsy program. The programs epilepsy nurse contacted me not long after then started arranging my pre surgery appts.

Because I live approx 4 hours away from the hospital the epilepsy nurse knew how hard it was for me to get to the hospital so she would try to fit in as many appts & tests as she could during the times I was there.
- I had my 1st set of tests in September 2010 which were the PET, SPECT & MRI.

-I had my weeks stay in hospital for my VEEG in November 2010 which turned out to be busy because every day I had someone coming in to see me to talk to me, whether it was one of the specialists or students (I didnt mind talking to the students because they to had to learn).
I met my Neuropsychologist on the Tuesday which was when she explained to me what her role is & more about the surgery.
I met the other Neuropsychologist on the Wedensday & had the Neuropsych evaluation.
I met the psychiatrist on the Friday

When I was in for the VEEG I only had a couple of auras but with all the other information the specialists had gathered it was enough for them to make their decision.

The only other pre surgery test I had to have 2 days before the surgery was an eye test. I can't remember the actual name of the eye test but it was the one where you had one eye covered with a patch, had to look through a little hole with the other eye then little dots would pop up in different directions & you had to press a button each time you saw a dot. Once you did one eye you then had to do the next eye.

 

[jemsister]

That eye test sounds annoying! D= I had to do a brief eye test thing last time I was at my neuro's (not yesterday, but the previous time) where I had to cover up one eye and then he would ask if both his hands looked the same and crap like that--I hated that part of the test. I kept getting that feeling like I was going to fail it or something. LOL!

 

[CQ:)]

That eye test sounds annoying! D= I had to do a brief eye test thing last time I was at my neuro's (not yesterday, but the previous time) where I had to cover up one eye and then he would ask if both his hands looked the same and crap like that--I hated that part of the test. I kept getting that feeling like I was going to fail it or something. LOL!

The eye test I had was with an opthomolgist & I had to have the eye test before the surgery then part of the 3 month post surgery tests. It was to see if there is any damage in your eyes before surgery & if the surgery has affected your eye sight. The opthmologist was nice but I didn't liek taht test too much because I knew I missed a couple of dots lmao.

When I 1st met the epitiologist he did a test where I had to look at his face, he would then put his hand to the side & wiggle a finger & I would have to tell him when I saw his finger. The epitiologists & the neurosurgeons did the same test on me after surgery.

The opthomologists test as well as the little tests that the epitologists & neurosurgeons did showed that I had a black spot above my eye which isn't a concern because it doesn't affect my eye sight.

 

[Cint]

The only other pre surgery test I had to have 2 days before the surgery was an eye test. I can't remember the actual name of the eye test but it was the one where you had one eye covered with a patch, had to look through a little hole with the other eye then little dots would pop up in different directions & you had to press a button each time you saw a dot. Once you did one eye you then had to do the next eye.

I have that test done once a year by my opthomologist. But I also have Type 1 diabetes and if the glucose isn't under good control, I could go blind. I also have astigmatism.

 

[jemsister]

CQ, yes, that's what I had to do too--stare at his eye, but talk about whatever he was doing with his hands. It's so hard to not glance at the hands!

 

[Elaine H]

Hi Jemsister I just dropped in and saw your plight regarding surgery, shall I shan't I. Although I have had surgery twice, it must be a different ball game when, like yourself, you have children to consider, and the possibilities of extending your family. I am also on four different drugs, and I don't regret having either operations, I was interested to see you are on Trileptal, that was THE drug, that finally stopped my godawful auras, after all the years of having those nightmarish things, that wonderful drug completely wiped them out, and I really don't think I would ever dare stop taking it! Since my second surgery in 2008, I am a lot better simple and Complex Partial seizure wise, but have recently started having Atonic seizures, I have had Tonic Clonics, but not for many years. There are no guarantees with surgery of course, you obviously know that, despite the fact that after my first operation in 2000, I went five wonderful years seizure free!! Then the damn things came back to plague me, I guess it's a case of pure luck, I have spoken to people who remain seizure free following surgery! This is a great site, and you'll get nothing but support on here. All the best to you, and I must try and drop in more regularly, life has been pretty crap over the last few years, and I spend most of my time trying to find a job, and typing up the book that I have written, all about living with this damn condition. Keep smiling! Cheers Lainey

 

[suzy01]

hi i had surgery 5yrs ago and it was nerve wracking but the best move i made i was a year clear of seizures when i first had surgery until i witnessed a bad accident that fetched my seizures back but a different type i now only have them in my sleep but the seizure are 80% better than before surgery was done

 

[Nakamova]

Hi suzy01, welcome!

And thanks for your report -- it's always nice to hear when things work out well, especially something major like brain surgery.

 

[jemsister]

Thanks, Elaine and Suzy, for sharing your experiences. Five years seizure free sounds like a dream to me! But heck, I would settle for better if I couldn't have cured.

 

[Amoobaa]

Hey Jemsister wow- what a lot of info and such a complex thread.. i hope you are doing ok :flowers:
I wish i could provide you with more useful info.. but i thought i would drop by and reply to your post just to wish you well and to empathise with all the decisions youre having to figure out.. Also- if you have any questions that i can help with re: surgery- I am having surgery next week- although mine is probably a different ball game, cos they are removing a mass.. rather than trying to find/locate/assess areas such as scar tissue etc. but once ive had the op, i'd be more than happy to share my expereinces if it helps, i know it really helped me to chat to someone who had the same op as im about to have also.. there was something else in your thread that i was going to comment on and ive promtly forogtten!! onder: stupid memory.no wait!! I know what it was! (let's pretend i didnt just sit here for three minutes trying to remeber) :lol: i was going to say- i had a neuropsych test too and will be seeing her again post op, i hope! Best of wishes to you and thanks for starting this thread- im sure it is and will continue to be of great interest to so many people here

Amoobaa :banana: