Operation To help Cure Epilepsy

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tate
New Member


Date Joined Aug 2006
Total Posts : 4
   Posted 9/22/2006 11:41 PM (GMT -7)   

Hi all,

I have had  a brain injury when i was 15 and was diagnosed with epilepsy at 16 ..... and am now nealry 28

I have temple lobe epilepsy I used to have most of my grand mals in my sleep, until recently, that is ...... now have them whilst awake as well.

the grand mals are one part part the absentee seizures I have are a huge part of my condition...... proberly the worst part... they are severe and can be quiet often....

As I have quiest bad side effects and that would be a whole another post, but I am sure any one on the list of meds could understand and i am having trouble with every day life...

I am on i am on 4 meds in my cocktail at present

topamax 100mg morn & night

tegretol cr 400 mg morn & night

lamictal 25 mg morn & night

tegretol 100mg morn & night

I have just been for a whole heap of tests eegs mri cat scans and pet scans

and still to go a sleep deprived eeg,

I am being evaluated to see if  I would be a good canditadate for

a temple lobectomy my neuro thinks I am a good candidate and has sent me to a top neuro for his opinion,...... to see if surgery could cure this...my removing a piece that stops the signals from going through or something..... find out mre 19th oct.....

I would so appreciate to hear from any one that has had any surgery ....... or is looking at having any......

bit scared really

 

 


aussie2006
New Member


Date Joined Apr 2006
Total Posts : 15
   Posted 9/23/2006 12:22 AM (GMT -7)   

 

  Hi,  

         I had left temporal lobe lobecotomy, 7 months ago , and to date ,everything is going well. I spent 1 week in hospital and a further 6 weeks at home recovering before returning to work. The degree of success for you,will depend on where it is located within your brain and what functions may be affected by the surgery.    I had 18 months wait, from when I had the video eeg, (which was  1 week in hospital also ) to when I had surgery. There is a lot of testing to be done to be sure it is safe for you to have surgery.  If you are asked about having a wada test, ask your specialist if you can have an fmri instead. The fmri is non  invasive  and gives as good as results as the wada test . For me, it was the fmri which made the doctors certain the surgery was safe for me.  Keep an open mind ,and if you are asked how you feel about the surgery, tell them, that you will decide on whether or not you have the surgery when you are given the details of how successful the operation may be for you. By keeping an open mind ,(which is hard I know) your specialists wont get the perception you have a closed mind to the idea of surgery.  I was given a 70% chance of cure and 20% chance of improvement.  The first time surgery was suggested to me I said that there is no way I was going to let anyone cut my head open and chop a piece out. Im glad I made the decision I did, you may take time to get used to the idea, but the younger you are when you do it , the quicker your recovery will be. I was 45 when I had surgery. At the very least go through the testing now, that way, if you are a candidate, you can come back later when you are ready for it.                                                                                                         I am still on my full medication ,dilantin,nuerontin,tegretol, for one year until after the operation, if all is still well then,the doctors will very slowly start to reduce the medications. Because I have been having these types of medications for so long, it is not the sort of medication that can be stopped in a hurry.           

                                 Good Luck- Aussie 2006

Post Edited (aussie2006) : 9/23/2006 10:40:17 PM (GMT-6)


maggie28
New Member


Date Joined Sep 2006
Total Posts : 14
   Posted 9/26/2006 6:53 AM (GMT -7)   
hi there!! I am an aussie too, & a brain surgery survivor!! My surgery was last year (July 2005) & I had all the tests; mri, fmri, eeg, pet, cat scan, video eeg, etc.etc. .....Yeah, did all that! but I'm glad I did! Everything has gone well for me, no seizures, & weaning off my meds, too! I am back driving now & getting my life back in order. I feel like I've been lost for years (that's the result of my meds!) & have just been found!!
I was awake part of the time during my surgery!! Don't freak, it wasn't too bad really, & I survived OK. My op was on the left temporal lobe, close to the site for speech etc.
My advice? Go for it! I know there are a lot of things to consider, just make sure you know the risks & alternatives! Make an informed decision, its your life its going to affect!! maggie
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