Hi Doe
Oh bless you! I had tears in my eyes reading this. I don't have any children, but I know how very important our memories are.
I have had Temporal Lobe Epilepsy since I was 23 in 1986, I had brain surgery in Sept 2000 to remove scar tissue on my right temporal lobe. I went five wonderful years completely seizure free, I would normally have Complex Partial Seizures before the surgery, sometimes I would have the aura beforehand, sometimes I had no warning, I would even just have the aura on it's own with nothing following it. I can completely sympathise with you, my short term memory is totally abysmal, I have an amazing long term memory though, and I know with the temporal lobe, memory is always affected. I can understand how you are feeling, especially like you say, you've got a child to think of, of course you want to see tham grow up, amd remember it all, I do so symapthise, I know how you are feeling. I take photos of everything, and keep a diary every day of my life, this helps me to recall events and things that I would normally have long forgotten.
Going back to my surgery, for some reason, after passing my driving test, getting a great new job, and coming back to life in every way, my seizures started again. I was sat at work at my desk, and the next thing I had a Tonic Clonic seizure, no warning, no real known cause, it just happened. Of course I had to hang up my car keys, and give up the freedom and independance that I had so enjoyed for the past year. I can't remember the odds that I was given for being completely seizure free before the op, but there was never any doubt about having the op or not for me, it was a case of, I just can't live with this condition any more, so anything was worth the risk.
Now, three years later, I have Hippocampal Sclerosis, on my right side, I am waiting to have further surgery down in London, different brain surgeon this time, this one is slightly better looking than the last one, and he's a jock like myself! I try and make light of my epilepsy, I think that it's the only way to deal with it for me, I have always said, it's not me that suffers with epilepsy but the poor sods around me, I'm not usually "there" when it's happening, if you know what I mean? I lost my dear mum just before Xmas last year, and it was thanks to mum being so firm with my specialists, that I had the surgery in the first place, she will be with me when I go for this second op, she's in my heart day and night, and always will be, I like to think I got a lot of her incredible strength of character from her, and I'm not gonna let her down. Like you, I am a little bit worried about wether the op will affect my memory, (can't get any worse) I was really worried about eyesight being affected, but that's the Occipital Lobe, and I've been assured that it won't be affected, I could not bear to go blind, I love so many things in life, and couldnt bear to not be able to see my gorgeous fiancee again! I have also always said that if having epilepsy as the only illness I ever have to deal with in my lifetime, I'll be very fortunate, there are so many people everywhere that are worse off than me.
I'm currently studying Epilepsy Care and Management withe Leeds University, I really wanted to know as much as I could about my condition, and it has been a fascinating course for the last four years, I would love to work with people with epilepsy eventually, I would love of course to have this operation to remove my right hippocampus, and have a successful outcome both short term and of course long term, my odds this time are 50/50 for a complete cure, with the possibility of a decrease in epileptic activity, but I have to look at it in a positive light, I can't lie and say that it doesn't hurt, of course it does, I felt as though I'd been hit with a cricket bat when I woke up, and to be honest, I was more upset that they shaved off some of my lovely blonde hi-lights!! Typical woman eh? but it soon grew back, and I was soon sitting up in bed having a laugh with the doctors and nurses, I was only in hospital for about a week, and I was on my hands and knees cleaning the kitchen floor two weeks later when my dad rang me one night. I really do believe that we should think ourselves lucky if we are told we are surgery candidates, I was in hospital with people who were told they were stuck with epilepsy for life, and as they didn't have a focus on the brain to operate on, they couldn't be considered for surgery, I felt quite humble to be told I could possibly be cured with surgery.
I hope my positive outlook will help you, I so sympathise with you and understand exactly how you are feeling, I've always been a bit of a glass half full person, I've always tried to turn my epilepsy into something positive, and I would never have met my fiancee if I hadn't had epilepsy. I'm writing a book about my experiences "Fit For Life", it should be finished after this next op, I hope to get it published. I did my bit on local BBC radio Npton this week as it has been National Epilepsy Week here in the UK, but I have heard nothing else, seen nothing else, read nothing else about this so common condition, people just want to shove it under the carpet, and as it was once associated with witchcraft and demons people think we're all nuts!! Any chance I get to talk in public I do, I spoke at The House of Lords in London, The Commonwealth Institute, and I've done a lot of radio and tv stuff, if it helps one person to understand, then it was worth it! If it helps, I'm on a website being interviewed,
http://www.dipex.org, I'm in the age range I think it's 35 - 50, I'm 45 anyway, then you click on page three, I'm patient EP22, and you can see and hear me being interviewed, let me know if you have a look at it what you think, they cover a lot of medical conditions, but just click on Epilepsy and follow the instructions.
Please write back, I have had so much support from the other folk on this site, and I hope you do too mate. Take care!
Lots of Love
Elaine x