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Epilepsy Action
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Epilepsy Surgery

Hi all, i've not been on here for a while, i've had a temporal lobe resection brain operation. i have been seizure free for 14 months now, it was a massive experience but the best decision of my life! Ask me questions if you need to :)

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Hi, how traumatic was the surgery/recovery period? Have you had any memory loss? This is the exact operation my partner will potentially need to have, will be nice to hear from someone who has been through it. Thanks

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Hiya, the operation itself was obviously massive but pretty straight forward. i was out of hospital 5 days after surgery. My memory has improved since and iv had no problem with vision. However, I found it very tough mentally with my recovery. They said if you suffer with anxiety, OCD or depression before the op then it can get worse after the op whilst you are re-wiring and recovering and it did, and it was really bad at stages. I'm being brutally honest because i wasnt really prepared for what was to come. HOWEVER it really does get better and i am living proof of that, you can message me anytime x

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Hi im so so happy it went well for you. At the minute im waiting for appointment for an invasive eeg which i have to say im terrified of. Have you ever had that done? After that and other series of tests i have to get done next week pet scan fmri mri and a video eeg all to see what the percentages are for surgery success. What did they tell you what chances you were going to be seizure free. Ive had epilepsy for 21 years and its refractory so no drug is working and i feel as tho this is my last resort im just terrified esp since i have a 4 year old and 9 year old xx

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hi there, i never had the invasive eeg so couldnt tell you about that. i had epilepsy for 31 years until i had the surgery....i got a 50% chance of becoming seizure free with a further 30% chance on top that if the fits didnt completely stop, they would be greatly improved. It is a tough thing to have but the best i decision i ever made, it changed my life xxx

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Hi Robotnics, I've been given similar success rates as yourself. I've said yes but still very unsure is it the right thing to do thou my seizures are getting worse so my options are limited plus I hate living like this. I'm worried about my memory worsening and other things. We're you scared? As it for me is a bit like jumping out off a plane with no parachute over the sea!!!

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Hiya,

Yes i was terrified as its a big operation but i looked at the alternative. Would I spend the rest of my life wondering what if?

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Hiya

Thanks so much for yr reply.

That was a long time to have epilepsy too, its hard to live with. They gave you good percentages then. Which hospital and consultant were you had it done. I am under Dr Rugg Gunn in university college london

I live in northern ireland so quite few more trips ahead. I take it they will have to shave off my hair as i see in yr pictures did that terrify you? I was offered surgery years ago but didnt go ahead with it until i got the invasive eeg stage because for some reason that seems to scare me more than the actual surgery itself. How long were you on the waiting list for surgery. Im so glad yrs worked out well. Are you able to work and drive now? Xxx

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Hi ya, I noticed you live in northern Ireland, me too. Can you tell me what happens after you leave London and come home. Is the care here good?

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Hi yeah that would be great. Im heading out to park today with boys as my hubby is off work. Does it suit to ring you in the evenings xx

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if you call me tonight i will be home by 8 xx

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I just posted about surgery I've had actually. I'm wondering how far apart your seizures were, and how long it took your attitude to feel better after surgery. I've still been having horrid thoughts and feelings. My main surgery was about 3.5 months ago, but then I had an additional surgery for hematoma about a month ago. Paranoia now too about the hematoma, that the surgeons could have f'd up and caused the hematoma, and that is part of reality, reality is what though? Who knows. Am I still bleeding? Am I dying? I haven't had seizures since surgery, but then again I might be unconscious in the hospital still. I have nightmarish thoughts every so often, for one because my seizures were very far apart (a month) and apparently very severe tonic-clonic that could last for up to an hour even. Though to me in a big way they didn't even exist due to unconsciousness for one thing, and grasping a totally different reality. (Seizure scars are reminders, but still not reality...?). I've started seeing a psych counselor also. My original post is up though, prior to reading yours. You even seem like you might be a fake installation for my psyche because I tried to post last night but it apparently didn't stick. I guess I needed to enter through the email they sent to acknowledge membership.

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i'm not a fake, i assure you. My surgery was june last year and epileptically seems to have worked but it did massively increase my anxiety in the last year. My anxiety has decreased alot. Now but it took a long time. i would have between 4 and 10 absence seizures a month and iv had 1 tonic clonic. If you want to talk more, message me

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Congratulations on being seizure free I remember having that same surgery in 2003 but unfortunately unsuccessful how did your physical recovery go?

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