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Has Anyone Had An SEEG Done Before Is The Operation Worth Having? I’m Uncontrolled & Only Have A 5% Chance They'll Stop With Meds Alone
I had the VEEG. That led to finding out I was a candidate for surgery and my chances were 95% of better control, 85% for total control ON meds and 70% for total control OFF meds. I've been off meds for 18+ years.
@A MyEpilepsyTeam Member
Like I said, I have refractory epilepsy and I had the SEEG where they decided there was no solution. So I later got a Vagus Nerve Stimulator (VNS) and now have a Neurostimulator (RNS).
You’re correct, it’s exhausting & takes pieces of life from you. I was offered it 10yrs ago out of fear I said there’s absolutely no way I’ll do that! The offer came and gave me another chance. I gotta take my shot because I’m hitting my breaking point.
Thank you for putting a smile on my face & for you being positive😊
You ask if the surgery is worth having. After you live a long time with epilepsy, you're tired of it and you jump at the opportunity to control it or even cure it even if there is no guarantee. I was so ready for the surgery that I was cracking jokes and making nurses wonder if I had a full deck. 🤪😉
I’m so terrified, I have Refractory epilepsy, it’ll pin point the spot 🙏. Then I’m doing the full on lobectomy.
For Those Who Have Had VEEGs... How Many Meds Did You Try First, And For How Long?
Can Someone Describe “uncontrolled” Seizures To Me? Like, Does Medicine Not Work?
Uncontrolled Seizures?
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