Epilepsy

Hiya, I've look on the internet about this disorder, but can't find what I'm looking for mainly because I really don't know what it is I'm looking for. All I really know is that there is a brain operation that can help "fix" this disorder.

I've searched for it but can only find that the people who have undergone it are happy. Which is no help really. I'm looking more for statistics on how successful (by successful, I mean: what are the chances of dying on the theatre table or being 'worse' than you were originally) the operation is and the pro's and con's of it.

If anyone can be of advise (if you've been through it especially) on any of this I'd be very grateful.

Reply 1

bright star

it really depends what's caused your epilepsy as to what operation you'd do and what the potential outcomes are. what is it exactly that you're looking for? why do you want to know?

Reply 2

Dream_Catcher

bright star

it really depends what's caused your epilepsy as to what operation you'd do and what the potential outcomes are. what is it exactly that you're looking for? why do you want to know?

To be perfectly honest I'm very uncertain. I know it is a serious form of epilepsy as the person in question has died due to it once already. I'm not sure how long she's had it for, it's just be for as long as I can remember. She was born deprived of oxygen, so that could be a cause I really don't know. Mainly the rest I'm here asking.

I'm mainly looking for the person best interests. She’s been on all types of medicines and not one have worked all because the disorder is incurable atm therefore they have to keep messing her about with different stuff. She was told about the operation a a long time ago and declined it due to having young children who could risk losing their mother. And recently she was told that she'd been put on a waiting list for the operation, which has a 3-year wait, without her permission. She didn't like that so told the doctors to take her off it. But they told her it was best for them to talk more about when she goes to see a neuropsychologist, (As you already know I'm not good with medical stuff therefore I don't even know if that's the correct doctor's name) which will be end of this month.

So I want to know the risk of death and what life is like after the operation. But in a statistically form even if this is an individual case.

Reply 3

bright star

it's just that obviously each operation comes with different risks, and what you'd do depends on what's causing the epilepsy. it could be anything from removing a cyst, to a subpial resection (lots of little cuts in the brain that limit seizures) to removal of half your brain. obviously the more drastic it is, the greater the risk. without knowing what the operation would be i couldn't possibly venture potential risks/risk of death.

Reply 4

Dream_Catcher

Well thanks for your help. If this means anything: she's has a shadow over her brain which they would like to remove.

It's annoying not anywhere on the internet (the thing thats supoosed to provide everything lol) does it give any indication of the chances of dying or being worse. :mad:

Reply 5

bright star

if you know the name of the procedure you'll be able to find studies on it. but no, i'm sorry that means nothing to me :s-smilie:

i don't know a lot about epilepsy, we haven't really done it yet.

Reply 6

Dream_Catcher

I'll try to get the doctors to tell me. Would any doctor be able to do that or just neuropsychologist? I probabaly know more than you and even I don't know alot as by looking on all the articles I don't need not much has been found out about it :frown:

Reply 7

bright star

the doctor won't be able to tell you about someone else's case. it'll be a neurosurgeon that was going the surgery. it probably wasn't on the curriculum at med school when these doctors qualified but they may well keep up with research on the topic. however, some wouldn't read outside their field so much. it depends. papers are what you need to be reading to get into success rates, and risks.

Reply 8

Dream_Catcher

Where would I get these research (assuming) papers from? Would they only be for medic students or are they public? And yes I'm pretty sure if I asked them they'd have to tell me or or my brother (her next of kin). Also hopefully I'll be able to get hold of the details before the end of the month so when I go to see an epilepsy 'doctor' *God having all different types of doctors is hard work keeping up with lol* I'll have some knowledge on it :p:

Reply 9

Revenged

You won't find anything out online... The risks and success rate depends on exactly where the epilepsy is localised in the brain... You'd need to ask the neurosurgeon...

Reply 10

username104603

http://www.epilepsy.org.uk/info/surgery.html

Reply 11

Dream_Catcher

Thanks for the replies, yes I'm going to talk them, but wish more was available online. As at least I'd have knowledge over they would be talking about.

Already been on that website :frown:

And to be honest it isn't that good lol doesn’t tend go go into detail or have any statistics it's very vague.

Hopefully in the future the Internet will provide what we all expect it to be now. (If that made sense lol)

Reply 12

bright star

what?? it will now. you just don't know what you're looking for precisely enough. "epilepsy operation" isn't enough.

Reply 13

Dream_Catcher

I know that's why I've took your advise and I'm going to the hospital now and will be asking the doctors some questions.

Problem is atm they don't know really what's wrong with her :frown:

Brother just told me that he's been there since 1pm ( observation ward, yes she was taken into hospital yesterday, after suffering two seizures in such a short time) and she's not really been talking much. Goiing to go see for myself.

Hopefully she'll be ok. cya l8a

Reply 14

bright star

Dream_Catcher

I know that's why I've took your advise and I'm going to the hospital now and will be asking the doctors some questions.

Problem is atm they don't know really what's wrong with her :frown:

okay, hope this works out for you all. xx

Reply 15

ph9

don't know if this is much help but i found this on the net:

Another common, under-utilised treatment is epileptic surgery. When medicines do not work, surgical treatment can cure epilepsy in a good majority of the people. It is standardised but the access may be limited because only a few centres do the surgery. The knowledge about the availability (of this option) is also not there. However, it is beginning to happen in India, although on a limited scale. It is as safe as any other brain operation. There are tests and procedures you do to make sure that you do not get into any difficulty because of the surgery.

from here

here's a list of websites that may be of help? hi

hope you find what you're looking for anyhow

Reply 16

flump

I hope everything goes well. I'm not medically qualified but I do know someone who had very severe epilepsy all his life. It was getting worse, he was unable to work and seizures were getting more frequent. He had surgery, I don't know the details but it was a big op. The scars were scary, his hair has grown back so you can't see them now.

His life has been transformed. He is driving and hasn't had seizures. I know it is only one case but at least it shows this can be very positive. He had to go to London for the op, I don't know which hospital but it couldn't be done locally.

Reply 17

Dream_Catcher

Just got back from hospital. She seemed very tired and as my brother had told me didn't talk much but tended to talk to me more :smile:

She’s on a dip at the moment and the doctors have done two visits: one before my brother was there (9-10am) and another just before I left.

Which involved asking her to open her eyes a lot and to try to focus on moving objects as well as doing some hand-eye co-ordination. She's didn't seem to be able to do much of it :frown:

They then asked her to try to see if she could stand up. Her balance was very off and she swayed from side to side. When asked to try to take a step forward she nearly fell, so we had to put her back into bed.

The doctor said that he wasn't really sure what it was but he thought that because she was on two types of medicines, that she was having side effects. Therefore they are taking her off on of them. More than likely the one she started in October, which she has said has been making her vomit.

They want to keep her in for a few days and tomorrow she will be seeing another consultant for a second opinion. Then more than likely an other doctor who specialists in epilepsy. Who is not present in this hospital on weekends. So until that happens it will be hard to know what exactly are we’re dealing with.

Flump: yes that another, she's scared of having a huge scar and having people look at her. She is unable to drive and work. She would love to work and probably will if she has the operation. As for driving I think it's been that long that the chances of her not wanting to in fear of having a seizure (still could happen you never can be sure) and not only putting her own life at risk but also other peoples.

Reply 18

flump

I'm sure the scar has faded but it is covered by hair so not a problem now. He hadn't driven for years, over 20 I think. He was nervous when he started but has been fine and seems confident now. I understand why she would worry but I think the doctors have to be really sure it has worked before they agree to you having a licence and have to be seizure free for quite a while, I think it was a year.

Hope it all goes well. It must be really scary for all of you and a big decision to make. Do let us know how it goes.

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