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Possible surgery - LTL

Hi everyone, I just wanted to share with you all the good news I got today from my neuro that I am in fact a candidate for surgery even though I have a few more tests yet to be done. My neuro called me today to let me know how the epilepsy conference went last Friday on my case in regards to how my EEG went back in Feb and discussed the possibility of surgery. He told me all was positive and now I have to do 2 wada tests, neuro psycologicol exam and a fmri scan which will all happen this summer :-) These tests will then give me a percentage rate of how the operation will actually go or succeed etc and then I make my fianl decision if i still want to go ahead with the operation. My neuro even said if I do go ahead with it, worst case scenario would be the surgery would take place just before Christmas so it doesn't actually take that long for all of this to happen once they get the ball rolling. I'm delighted! :-) But worried too because I dont know how to explain all this to my family without getting them all up tight. They are not up for the surgery. I have to think about this carefully, for me as well. I thought the waiting list for surgery would be long after the testing was all done but aPPARANTLY NOT :-)

Comments

Re: Possible surgery - LTL

Wow..that is big news for you and very exciting! And a lot to think about. Sending good thoughts your way today! Think carefully and balance the risks vs benefits; only YOU know right move for you. I have had to decide on 2 tricky spine surgeries so I can empathize a bit with you here. :)

Best wishes!

"If you can laugh at it you can survive it'---Bill Cosby

Spaznurse

Re: Re: Possible surgery - LTL

thank you Spaznurse,

I am very excited but yes there is a lot to think about too like you say.

all is good :)

Re: Possible surgery - LTL

Hi everyone
Just wanted to share an update with you,
I had an appointment with my neuro a recently and I discovered that I do not have LTL epilepsy afterall! Instead I have Parietal Lobe epilepsy!!
My own mistake I suppose - I guess I always assumed I had LTL epilepsy because the scar I have is in the language area which to me I always thought was the temporal lobe. But apparantly the language area is linked to the temporal lobe and parietal lobe - both of them.
And I am in the small percentage range for people who have parietal lobe epilepsy. And when I started looking up info omn parietal lobe epilepsy, I realised it really fits with my description of seizures en all!

So my neuro said that if the tests all go well and I want to go ahead with the surgery, I would probably have a 60-70% chance of being seizure free rather than 80% like the temporal lobe surgery.
Interesting huh?

I have also spoken to my parents about the possibity of surgery, explained that I have a few tests to do yet but a tthe end of the day it's my decision. We talked about other possible option th ketogenic diet, which my parents were not keen once told about it. They are still not for surgery, but they now know it's my decision and I'm doing it for a good reason. I'm not rushing into it either. I will decide wisely after the tests are done.

I feel a lot better now that they know what is going on :-)

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