Experience with SEEG? Looking for families to connect…

@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

@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.

@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

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)

@santosha thank you for the mention. @mommadee3612 my heart goes out to you because these are very tough decisions. In my case, I was desperate for surgery because I wanted to bring my epilepsy under control. I would have done anything. The neurology department at Tampa General Hospital put me through the exhaustive process for SEEG with the anticipation of a VNS for my TLE. I went through the grueling neuropsych evaluation, the EMU, which detected a seizure, and the SEEG was then approved. Fortunately, I had a serious fall due to a medication mistake, and I had a TBI with brain bleed. The SEEG was taken off the table.

Three years later, my Mayo team said the SEEG and a possible VNS would have been a huge mistake in my case. They just shook their heads in disbelief that SEEG was even being considered. Everyone is different, but I agree with Chris; please be sure before you move forward. I've talked to several who have had the SEEG and either an RNS or VNS, and these are not easy fixes without side effects. I've had some say the SEEG was traumatizing, but then there are others who had little issue. In fact, I have a friend who used her SEEG and future dissection to film a documentary. For me, at 62, surgery isn't something I'd go for in my epilpesy journey. I have absence and nocturnal seizures, so I accept that there are risks, but at my age I am ok with that. For a younger person, it is completely different, especially with autism.

In my opinion, I'd look at the SEEG as a completely different surgery with its own unique challenges. Then look at any resulting recommendation as something completely different with its own unique challenges. This is why I love Mayo! I trust them with my life. Saying a prayer for you and your family.

Dan

P.S. My TBI and brain bleed required a burr hole surgery. Feeling an indentation in my head every day and also the other surgical marks in my skull bother me to this day and it's been about six years since the surgery. It is a mark you don't forget. Also, my aftercare team told me that I would have to be careful about falls for the rest of my life simply because the surgery has forever weakened the integrity of my skull. You are right to be careful about this decision.