Surgery for daughter

Hi my daughter was diagnosed with focal epilepsy at 6 months. She’s now 2 1/2 and has been offered surgery (A Hemispherectomy) which involves disconnecting half her brain from the other. I was wondering if anyone has had any neuro surgery done before and how it went and how you are now. The decision has now been left to us parents and are struggling to make one until we find out more about the procedure or if anyone has had anything similar.
Thank you in advance.

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Hi @Frazer_penn

Thanks for your message. I can imagine that it’s a difficult decision to make, and that you are looking for as much reliable info as you can find.

We’ve got some great articles and videos from Young Epilepsy on The Channel that might be worth a read or a watch:

6min video of when young rep Annie met with Martin who is a children’s brain surgeon at Great Ormond Street

Brain surgery is an option for me, now what?

Millie shares her story of surgery (and a picture of her scar)

Let me know if i can help some more…

Chloe

Hi @Chloe-YE

Thank your for giving us this information, it was good reading and watching the videos. I believe the surgeon who is in the videos is who will be performing the operation on our daughter Florence, we was hoping to get in contact with other family’s who have been through something similar. Do you know how we would go about doing this? Basically it’s causing lots of anxiety for myself and my wife and there’s only so much support you can get from your own family and it’s quite hard to get hold of the health professionals for additional support. Without being disrespectful to the nhs we feel we’ve just been given this opportunity to have surgery given a leaflet and been left to get on with it!

Hi @Frazer_penn ,

Hope you’re alright! I’m the person who interviewed the neurosurgeon in the video. :slight_smile: I had brain surgery myself in 2019 for my epilepsy. Mine was on my temporal lobe where they basically just took out one of my angiomas in hope to stop my seizures, so not quite the same as what your daughter might have but I still hope I can help! I know exactly how you feel about just being left to do your own investigating, me and my family were very much the same. My surgery was predicted to be 4 hours and ended up at 6, but it went really well and I personally had no post surgery problems. My seizures, despite not going completely, are very reduced now. I still have them from time to time but they’re nowhere near as severe as they used to be either so I see it as a win! If you have any other questions, feel free to ask. I can also ask my Mum anything if you want to know something from a parent’s perspective. :slight_smile: I wish you and your daughter luck!

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Hi @annielams

Thank you for the reply, if you don’t mind me asking how old where you when you was diagnosed with epilepsy and what was the cause. Florence has cortical dysplasia and I believe there are a few areas of the left hemisphere that have malformations hence why they want to disconnect the whole hemisphere to stop any abnormal activity spreading over to the good side. When you had your surgery was there any effects on your mobility or speech? We was told if we go ahead with the surgery Florence will lose her peripheral vision on the right side and then she will also develop some right sided weakness in her hand and legs. Did you make the decision yourself to go ahead with surgery? Me and my wife have been trying to weigh up the pros and cons of the surgery, I personally just want to bury my head in the sand and not think about it, but I know that isn’t the way to be as a parent I suppose I act a little selfish because it’s not about us it’s about my daughter and her future. I just worry about silly things like will she be bullied when she goes to school etc. Did you have your surgery at Great Ormond Street, apologies for all the questions, like I said we are just trying to gather as much info as we can before we make the leap.

Kind regards
Frazer.

Hiya! No worries about all the questions, I can understand why you have them! I was diagnosed when I was 8 yrs old but thought to have had it my whole life. It was passed down to me genetically from my Mum. Personally I had no mobility or speech issues which i was also warned could happen due to me getting weakness in my right side when I have a seizure. The only effect was slight short term memory loss in first few weeks after my surgery but i was told this was due to my surgery being near the hippocampus. Because of me being 18 when surgery was proposed to me, my family let me make the decision for myself, purely because at that point my seizures were happening daily. A big part of me making the decision were the statistics of my seizures disappearing and as the surgery was in my temporal lobe, it wasn’t as high risk as some other brain surgeries. If it helps, I was also offered the surgery when I was about 10 years old and turned it down due to my worry about it so in my situation I was offered it again. Maybe ask your doctor if this could be an option for you if you feel like you maybe want to postpone? My surgery was at the Queen Elizabeth hospital in Birmingham as I’m based in the West Midlands. I have written a blog about how the surgery went if you want to know more on my own site and I wrote a few updates throughout the following year as well
https://aboveaveragesentences.com/the-beginning-of-the-end/
Whatever you do, don’t think of yourself as selfish, it’s not everyday the idea of brain surgery presents itself. My best advice is to just take things one step at a time and you’ll do great. :slight_smile:

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