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Second surgery for my 28 year old son. Advice needed please.
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.
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After a truly dreadful night of seizures, a ray of hope came by way of a phone call from David's hospital (The Epilepsy Society, UK) with a date to admit him for 2 -3 weeks to review his meds, under the watchful eye of his overall consultant; a man we trust. David will be admitted on the 5th August. For the first time in far too long, I feel as if I could actually hope.
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3 Reactions@sarahlou
I hope you’ll keep us informed of David’s condition/progress/hospitalization.
Just curious, did you ever participate in the Epilepsy society’s forum either for yourself or David? We may have unwittingly know each other back then.
Wishing you both the best.
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1 ReactionDear@sarahlou, I do not usually visit this site because I personally have never had seizures. I don't have much to contribute as far as personal experience. I am not a medical practioner, although I have always known friends who did have seizures. Being in Special Education for 18 years, I was always around children who took medication daily for seizures. But while we were on vacation earlier this year, my daughter and I watched a documentary about an extremely low carb diet, a keto diet, actually. The little girl in the documentary greatly reduced the number of seizures she had by adhering to the keto diet. She also had to take much less medication, if any at all. It does not work for everyone. But it has shown so much improvement in so many patients, it might be worth a try. As always, any changes in diet as drastic as that should probably be discussed with one's medical practitioner first. My physician is happy to know how much better I feel on the keto diet. Diabetes Type Two responds very well to the keto diet also. Moods are more level, thinking is clearer. This is my experience, I cannot speak for everyone, obviously. I am so happy to hear that your son is volunteering and staying active. You and your family will be in my thoughts and prayers. Please keep us posted about your son and how he is doing.
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1 ReactionGood morning Jaje, yes, David and I both participated in the Epilepsy Society forum. I log onto that site as Wendygrunch ( a silly pseudonym). Just to update ypu all; David has been at the Epilepsy society for a week so far, having his meds overhauled under close supervision. He's actually quite content there. There are a dozen or so inpatients, mostly younger people, so David is in the rare position of being the norm, not the exception, as a young man with yet to be control seizures. There is a large day room where most of the patients spend their days together; playing pool, watching films, eating together as a community etc. His meds are being changed quite rapidly, which obviously couldn't be safely done at home. I'm taking my mother to visit him on Monday. The only drawback for me is that it is a 2 and a half hour drive, but I think that it's actually been good for David to have some relative independence.
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2 ReactionsWasn’t sure if you updated since July... was laser ablation or RNS considered?
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.
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1 ReactionI’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.