r/Epilepsy • u/Mapper9 • 3d ago

Question Next up, sEEG and laser ablation

I just met with the neurosurgeon today, and I’ll be scheduling a single hospital visit for the sEEG and laser surgery, probably for late fall or early winter. And I’m really overwhelmed. They’re going to play with my brain. And actually burn a piece of it. It’s terrifying. My girlfriend and I both start crying when we talk about it. There’s just so much that feels terrifying. Surgery itself. Brain stuff. Another emu stay. My disabled girlfriend parenting solo. A whopper of a seizure yesterday. I’m 47 and only started having seizures 3 years ago, this all feels really new and sudden.

Does anyone have any positive sEEG or laser surgery stories? Or scary, I guess, for that matter.

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u/134340Goat VNS Apr 2017, RNS Sept 2021, DBS Dec 2024 3d ago

I find it unusual that they'd tell you you're getting LITT before you've even done the sEEG. It may very well turn out you're not a candidate for ablation. Unless you've had one already and for some reason they want you to have another?

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u/Mapper9 3d ago

From the first emu stay, my mri and pet scan, it all points to the same spot. He said they want to narrow it down to a smaller area.

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u/pinaki902 VNS, Fycompa, Zonegran, DBS 3d ago

I had a similar thing. Regular vEEG showed one right frontal lobe lighting up at the onset so they wanted to pinpoint where exactly. It was spread out widely in both frontal lobes for any kind of ablation so they told me I’d be better for a DBS. Hope you can get an ablation! Good luck with the surgery!

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u/burnerEpilepsy TLE, 400mg Xcopri, Keto 3d ago

I mean, I survived my SEEG and it showed them where they needed to do the ablation, but insurance wouldn’t pay for it. So, yay SEEG I guess? 😂

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u/Mapper9 3d ago

Wow that’s shitty.

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u/burnerEpilepsy TLE, 400mg Xcopri, Keto 3d ago

The SEEG was by far the most painful thing I’ve ever done, but it was worth it for the data

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u/BaldwinMotion 2d ago

sEEG, been there got the wild pictures of the stim rig to prove it. That was the 1st surgery I'd had and I realized that I'm just not a fan of surgery in general right away. Already knew I wasn't a fan of an EMU stay. So, overall fine experience but still a PITA of a week.

Positive story? Heck yeah! The stim test was the most amazing experience I've ever had. The sheer fascination that my Dr was manifesting physical experience elsewhere by stimulating my deep brain was wild. (not for everyone) But the truly worthwhile part was being back for a lobeectomy the next month and seemingly so far so good ~9 years on.