Unsure about Surgery

doe

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Hi everyone, I'm new to this site. I've had temporal lobe epilepsy since I was 9 months old. My seizures somewhat disappeared (as far as I know) from age 2 to 16. I then had simple partial seizures which never could be controlled and therefor had surgery at 23. It did not work. It seemed to have shortened the length of my seizures though. However, by the age of 37 (3 years ago) my seizures which are now complex partial seizures are occurring more often, 12- 15 a month. I've tried various medications. (there's still plenty to try, though). I now have been tested and have had an MRI and they have decided that a second surgery would be successful. (well, 70% according to the surgeon, 90% to the head doctor) However, because they are dealing with my left "hippocampus" the surgeon has said that I could lose my verbal memory. He doesn't know if I use that part of my brain for that or not. I don't want to have to walk around with a pen and paper the rest of my life writing everything down or else forgetting whar people say to me, etc. Or if my 6 year old daughter tells me to pick her up, and I forget???? When I questioned the nurse on this she of course was going to give me the phone # to someone who's had the surgery who is doing well. But I know they wouldn't give the # to some one who isn't doing well. I guess I want to see both sudes of this. I'm a little scared the second time around because I have a family this time. Alittle girl that I want to see and remember growing up. I know that the seizures and medications also affect my memory but perhaps that will take longer????? Thanks so much for all your help... Doe
 

Bernard

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Hi Doe, welcome to the forum! :yippee:

If you read around in this forum a bit you will find some folks who have managed to attain decent seizure control via natural means (diet/vitamins/supplements, sleep, neurofeedback, stress/energy therapies, etc.). We have quite a bit of interesting information already posted on these subjects and perhaps you may find something that works for you. Then again, maybe not. Everyone is different.

One thing is for sure though - 99.9% of doctors will not explore these possibilities without a patient being proactive in his or her behalf.

My wife, Stacy, was also having uncontrolled seizures not too long ago (grand mals/TCs once a week) with the discombobulated memory, diminished cognitive functions and all that. But she managed to get the seizures controlled again via diet, sleep, Dilantin and neurofeedback. Once the seizures stopped, the memory and thinking ability have been rebounding.

There are a few members here that have also had surgery and I hope that one will respond to your post. Surgery is supposed to be fairly effective for those who qualify for it, but it is not a magic bullet either as you well know (since you've already tried it once).
 

lindy

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I have left temporal lobe epilepsy and, after 20+ years of one drug or another, was told that my seizures (complex partial and grand mal) were intractable. The surgery was recommended to me and I decided not to do it. One of the major reasons why I decided not to have the surgery was the fact that I would have to learn how to speak all over again and not being able to talk would drive me absolutely insane. Instead, I stopped the drug routine and found control with vitamins and supplements. Do you know why you have seizures in the first place? Mine are idiopathic but I believe that they are genetic. Do you know what triggers your seizures? Stress and being overly tired are my two biggest triggers. The more that you can figure out about what sets off your seizures and what you may be able to do on your own, the better off you will be!
 

doe

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Hi Lindy, I have tried many different types of medication as well as seeing a naturopath who even said that perhaps surgery may be necessary in my situation. My seizures are not genetic. They are not 100% sure why I have them. Even though my mother does not recall me having ant fevers the doctors say that perhaps I had a fever 20 minutes before the seizures occured when I was little, and therefore it could be fevral epilepsy but this is just a guess by the epilepsy team. My seizures are not occurring due to stress or tiredness or any particular reason or pattern????? Thanks for listenong. Doe
 

lindy

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I don't know for a fact that I inherited my epilepsy. My mother claims that the seizures are the result of an accident that I had as a child (fell out of a tree when I was 10 and broke my back - the partials started a year later) but there has never been any evidence of a brain injury. I have only had one conversation with my mother that I consider to be really honest. During an argument with one of my sister, my mother (according to her) "purposely passed out" from the stress. She said that she hadn't done that since she was 16. Anyway, right after she "passed out", she called me all upset and wanting to talk through the postictal hassle. Although she never called what happened a seizure, the answers she gave to my questions leave little doubt. I asked her if she had bitten her tongue very badly (yes) - wet her pants (yes) - severe migraine and exhaustion (yes) and I could hear the trouble she was having talking. She also told me that her mother used to walk around, smacking her lips and shaking her hands (both of which I do during my partials). She has denied all of this since that one conversation and is back to telling me that I am brain damaged. So, technically, there is no cause for my seizures. I have been amazed at how well vitamins and supplements work for control. It really makes me wonder why doctors are so ready to prescribe toxic drugs and so ready to push for surgery when the drugs don't work without ever addressing the possibility of a biochemical cause which can be dealt with nutritionally. You would think that that would be the first thing that they would check into!
 

Elaine H

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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
 
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Mandy

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Hi Lindy! My seizures started when i was a baby, they stopped at the age of 3. I went 12 yrs without a single seizure and got it back when i was 15. For the past 16yrs i have been taking 3 different types of meds to control them. The medicine would control them for about 5-6 yrs and then i would have seizures again and they would switch my meds. But now i'm to the point where i have them every week. I was recommended by my neurologist to see a neurologist from Thomas jefferson to see if anything can be done. I saw him and he wanted to send me down to Thomas Jefferson Hospital to study my seizures. I went to Thomas Jefferson hospital center for epilepsy and was there for a week. I don't know when i have them,people have to tell me. I never thought i would say it,but it was really interesting being at the hospital. I was on camara 24 hrs a day and was hooked up to an EEG monitoring unit so they could see how many seizures i had and where they come from. I was having 5-6 a night and not even knowing it. They did a Pet-scan and a MRI as well. What i learned is the technology down there is different and more neuro-specific than around where i live. The hospitals around me,there MRI machines are for all. I was told by my neurologist yesterday that all my tests show that my seizures happen in my left temporal lobe and I'm a candidate for temporal lobe surgery. He said that there is a 70-75% chance i may never have them again,but it can mess with short-term memory. Everything you already know you won't forget, but anything new may take longer to remember. I don't know what i'm going to do. I'm a little afraid of the risk. So i understand where your coming from. Take care and keep me posted!
 

Elaine H

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Hi Doe

Wow, I'm so pleased to read about someone who is in a similar position to me. I'm 45, I got diagnosed with Complex Partial Seizures at 23, no drug has ever been able to help me, I had brain surgery in Sept 2000, it worked for 5 years, I am going into hospital again next week, June 26th to have my right Hippocampus removed, and I am pretty much dreading it!! I am scared of waking up and not recognising anyone or anything, I know it's the part of the brain responsible for short term memory, and I suppose that can't get any worse than it is at the moment, but I am terrified of what I'll feel like when I wake up, I couldn't bear to not recognise my wonderful fiancee, he has been such an amazing support to me through all this, but at the same time, I just want to be rid of my epilepsy, it has well and truly stuffed things up for me over the years, especially in my career, I'm currently out of work again because of people's stupidity and ignorance. Have you had to put up with the same thing as myself in the workplace? It must be even worse having kids and going for surgery, I don't have kids, but I so understand how you feel.

I would love to hear back from you, we can all be such a support to each other on this site. Take care.

Best Wishes

Elaine x
 

RobinN

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Elaine - this thread is 3 yrs old, and she has only posted twice, so it is doubtful that you will get a response.
 
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