Brain Surgery and Epilepsy

sandy71

Has anyone had this done? I have been looking into it and am thinking about asking my neuro if I would be a suitable candidate. I am so sick of taking so many meds:(
Would love to hear from someone who has had it done.

[Deleted User]

there is a forum on the NSE site where you will find people who have had surgery that you could chat to:
http://www.epilepsysociety.org.uk/Homepage
its free btw

[Deleted User]

I've done it. I had a piece of my right temprol lobe removed in 2005.
Long story but still on some meds and having some seizures but I'd still say it was worth it. The reduction in medication, reduction and severity of sezures, ability to work full time all made it worth imo.

You can IM me if you want to chat about it.

sandy71

woodbine wrote: »

there is a forum on the NSE site where you will find people who have had surgery that you could chat to:
http://www.epilepsysociety.org.uk/Homepage
its free btw

Thanks will check it out.

_shel wrote: »

I've done it. I had a piece of my right temprol lobe removed in 2005.
Long story but still on some meds and having some seizures but I'd still say it was worth it. The reduction in medication, reduction and severity of sezures, ability to work full time all made it worth imo.

You can IM me if you want to chat about it.

Thats the reason I am thinking about it, not sure if I will be suitable though.
Sorry if I sound a bit thick but whats IM

Indie_Kid

I think shel means you can always drop her a private (or instant) message on here?

I don't know anyone whose had the surgery; but do believe there was a programme on TV about this a while back 2 kids who had the operation. Very interesting.

Quackers

sandy71 wrote: »

Has anyone had this done? I have been looking into it and am thinking about asking my neuro if I would be a suitable candidate. I am so sick of taking so many meds:(
Would love to hear from someone who has had it done.

Hi Sandy,

My daughter had neurosurgery almost 2 years ago now.

She had an operation called a 'hemispherectomy'

http://en.wikipedia.org/wiki/Hemispherectomy

She had the surgery in march 2008. She was having at least 1 seizure a day...and up to 15.

She is one of the success stories. She has not had a single seizure since the operation :j

My daughter has cerebral palsy/right hemiplegia since birth so her right side of her body has always been weak. The left sign of her brain (where the epilepsy was coming from) always been damaged. So, side effects for her were a little more weakness in her right side - but I imagine this would be greater if you had no weakness to begin with? Her face also dropped after surgery (similar to stroke victims) but was back to normal fairly soon.

She was on tegretol and topirimate. Topirimate was weaned down to ZERO a year after surgery. We will be looking at weaning off tegretol later this year or early next year - but if there are any signs that seizures may return we will stick with taking the tegretol forever me thinks!!!

Her life has totally changed. Her seizures started at puberty - around 10/11 - and gradually got worse. She lost all of her confidence and had no social life. Its slowly returning.

She's now at a specialist learning college. Is taking an NVQ in Floristry. Went camping in Italy last summer. Is living

If you have any questions at all please do not hesistate to ask

What type of seizures do you have?

Indie_Kid

Quackers - that is excellent news.

sandy71

Quakers thank you so much for sharing your story. It has really helped and I will definitely ask the neuro about it. I was only diagnosed 18mths ago though looking back it had been going on a while.

I got very bad very quickly so at the moment I am on keppra and lamictal and clobazam as a rescue med. The neuro is also talking about adding tegretol. The thought of taking all those meds for the rest of my life is awful but at the moment I'm lucky to get a full day without one kind of seizure or another:(
I get simple partials, complex partials and tonic clonics and I hate every single one.

I am so pleased your daughters op was so successful it really gives me hope.

Did she have to have a lot of tests before it or did they just do it and how long did she take to recover?

Sorry I won't bombard you with too many questions:o

_shel would you be able to answer my questions aswell:o

I will shut up now

Quackers

sandy71 wrote: »

I am so pleased your daughters op was so successful it really gives me hope.

Did she have to have a lot of tests before it or did they just do it and how long did she take to recover?

Sorry I won't bombard you with too many questions:o

_shel would you be able to answer my questions aswell:o

I will shut up now

No Probs

She had Complex Partial seizures too

She had to have MRI & CT.

She also spent 2 separate weeks in Manchester Childrens hospital. For a whole week she was wired up to EEG & CCTV ( yep, really!). They wanted to see her seizures as they happened and record what was going on inside her head

She had to see and educational physcologist (I know that's spelt wrong!! lol ) where she had a very long 3 hour assessment to see how her brain worked - this was to see whether disconnecting the left side of her brain would have any serious side effects for her.

She went down to have her surgery....then the surgeon came and found us. He'd only read the report whilst she was being knocked out for surgery....there was a very small chance that when she woke up from surgery that she would never speak again :eek: 'would you still like to go ahead?'

well, we did...we made the decision for her...thankfully her speech returned fully. 2 of the surgeons who operated on her poked and prodded and just generally irritated the life out of her in intensive care just after surgery until she told them to go away - they weren't going anywhere until she spoke :T

I have no idea how we would have dealt with that situation if it hadn't. No idea at all!

Recovery was at lightning speed. home after 5 days.

If you want me to post a post op pic I will? I have on here before and my daughter doesn't mind

She has just recently had surgery on her leg - the recovery and the pain was so much worse.

There is no feeling in the brain so the only pain for her was a headache and a bit of soreness around the scar. It healed amazingly well & very quickly.

I really don't mind the questions and will answer any that I can

Quackers

There is also another user that I know of on here that has had neurosurgery for Epilepsy.

I will send her a message and ask if she would share her story with you

sandy71

Thank you so much Quackers. I have had a few MRI's already so not sure if they would count.
My neuro did say she wanted to keep me in for the video telemetry a while ago (before I had thought about the surgery) then went on to say they didn't have the staff to do it so that was helpful!!

It must have been scary for you when the surgeon said about her speech, just the thing to drop into conversation:eek:

5 Days!! after brain surgery, thats amazing. If I get it done I am planning on milking it for at least a year:rotfl:

A pic would be great, are we allowed thngs like that on here? Don't want the MSE police to come round:D

Your daughter sounds amazing, how old was she when she had it done? It must have been hard for you to make the decisions for her.