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sarahlou
@sarahlou

Posts: 7
Joined: Jul 05, 2018

Second surgery for my 28 year old son. Advice needed please.

Posted by @sarahlou, Jul 5, 2018

My 28 year old son, David, has had severe epilepsy since he was 11; mainly nocturnal, tonic clonic seizures, has been in status several times. 5 years ago, he underwent intracranial eeg followed by resection of the right half of his frontal lobe. He is intelligent, sociable, a keen volunteer and still has seizures. So, he is on a waiting list ( we are in the UK) for a second surgery. This would involved him being awake, because they are going very close to his speech and motor skills areas. A 20% chance of emerging from surgery seizure free has been suggested as have a list of likely negative outcomes, including speech and mood issues, and possible loss of mobility on the right side. I do not want him to have such a highly risky surgery, but he is grasping at the chance, however slim, to be rid of seizures. He is often reminded of the high mortality rate for people with nocturnal seizures of his severity. I feel that the hospital are pushing him towards this surgery and I am utterly terrified. I'd be very grateful for any advice. Thankyou.

REPLY

@suellipo68

Wasn’t sure if you updated since July… was laser ablation or RNS considered?

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Neither are suitable for my son. He's currently having his meds reviewed as an in-patient and is coping well with the changes so far.

@suellipo68

Wasn’t sure if you updated since July… was laser ablation or RNS considered?

Jump to this post

I’m glad to hear he is coping well with meds. My son just had laser ablation for frontal lobe epilepsy. He participated in a research project with a Tesla 7 MRI to find the focal point causing the seizures. It’s only been a couple weeks since the surgery so time will tell but no seizures so far. Prayers for your son and you.

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