Experience with SEEG? Looking for families to connect…

Posted by mommadee3612 @mommadee3612, Nov 28, 2023

My son is 16, has intractable focal epilepsy, and we are considering invasive monitoring (SEEG). We met with the surgeon last week and would really like to connect with someone who has experienced it. They are asking that we commit to up to 30 days with him basically on bed rest. He has high-functioning autism, as well, so we are feeling very stretched to our limits with the potential procedure.

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Leonard | @jakedduck1 | Nov 28, 2023

@mommadee3612
Is the purpose of the seizure mapping for neuromodulation like the Responsive Neurostimulation System (RNS) or is surgery being considered? How often does he have seizures?
Does your son have Temporal Lobe Epilepsy?
Take care,
Jake

mommadee3612 | @mommadee3612 | Nov 30, 2023

@jakedduck1
Surgery- ablation/re-section is being considered as the first route, if that’s not possible, RNS would be a secondary option.

He does not have temporal lobe, the focus is very close to his motor cortex.

Leonard | @jakedduck1 | Nov 30, 2023

@mommadee3612
Isn't that frontal lobe?
I have tonic clonic seizures (used to) that originated in the frontal lobe. I was offered surgery numerous times, but I always refused. Thankfully my parents respected my wishes. I doubt I ever would’ve had surgery, but if I had TLE I may have given it more consideration.
I don’t think the outcome statistics are that encouraging for frontal lobe surgery. I know there are success stories out there, but there’s also tragedies too. A good friend of mine in England died after Temporal lobe surgery. My dad had brain surgery with lifelong complications. However, his surgery was done a very long time ago but that's not to say those same or worse problems couldn't happen today.
What I don't like is how doctors seem to accentuate positive outcomes and often gloss over the potential complications.
Take care,
Jake

Chris Gautier OR Santosha | @santosha | Dec 1, 2023

Hi @mommadee3612 and @jakedduck1
Before surgery, try to consider other options, if possible.
After trying several AEDs, surgery/ablation was also considered my first route for my temporal lobe epilepsy with sclerosis on my hippocampus, left side. It was observed that I had drug-resistant/refractory epilepsy. Thankfully, I have seen a second opinion from another neurosurgeon, who did not recommend the surgery to me, as it would cause several losses in my cognitive reserve. So, I explored other options: CBD (medical cannabis), gluten-free diet, and yoga. With a gluten-free diet, my seizures were reduced by more than 60%. I still have an average of 2 complex seizures per month which do bring a cognitive decline, slowly. But it is better than having a great cognitive decline all of a sudden with surgery.
Exploring now other alternatives to reduce even more my seizures, such as TMS (transcranial magnetic stimulation) and an anti-inflammatory diet.
What a courage Jake to refuse surgery! I admire that attitude. In my opinion, surgery in epilepsy should be the last option, when all traditional and alternative options have been explored without success.
Wishing you all a great day!
Chris (Santosha)