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August 25
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A MyEpilepsyTeam Member

Nothing is 100%. That includes our seizure meds.

I had my left temporal lobe brain surgery in 1998. It didn’t make me seizure free, but did reduce the frequency of my seizures. I use to have severe seizures. Now I have mild and moderate seizures.

Ignore the Articles . Think of your situation of your epilepsy and seizures. Are they severe seizures? Do you have many a month? How many different meds have you been on, with minimal results? Are you willing to take that jump, hoping to be seizure free or better seizure control ? You maybe able reduce your seizures or their frequency. A % of people were able to be seizure free .

I’ve been on many different meds trying to control my seizures. Non of them were able to work 100%. I had the DBS ( Deep Brain Stimulation ) put in 2022.
I still have seizures but between my meds and the DBS , they have reduced my seizures by a lot.

August 25
A MyEpilepsyTeam Member

At my diagnosis in the hospital (definitely not the hospital of my choice, it's where the ambulance took me), the neurosurgeon vehemently insisted on a Right Temporal Lobectomy, despite the fact that the focal point was only a small cavernoma in my RTL. I vehemently resisted. As with any time a doctor pushes anything at me, especially surgery, I went for a second opinion, this time with an epileptologist. His words, "Why don't we just try to control the seizures through medications first, and leave surgery as a last resort?" I never had the surgery, and we eventually got the meds straightened out. I've been seizure-free since 2019, after he started managing me. The first neurology team appeared inept compared to the epileptologist.

Everyone is different! What Randy said is exactly on point. You have to assess your own situation to find the best path forward. I knew nothing back then, so I sought out a specialist. In my case, the surgery wouldn't have been so much for seizure control, it would have been to remove the cavernoma due to its risk to leak blood. I just wanted to be as certain as possible that before I allow someone to remove a piece of me, it's to my benefit. It turned out that the risk of a bleed is pretty low and only increases 1% a year. My case is different than yours, and a visit to a specialist changed everything for me. It cleared up the mystery of risk vs benefit. Knowledge is power.

August 27
MyEpilepsyTeam

Should you have brain surgery if your doctor is recommending it? That's a really important question, and it's worth understanding the full picture before making any decisions.

The success rates for epilepsy surgery are actually more encouraging than 50/50 in many cases. For medication-resistant epilepsy, surgery has about a Show Full Answer

Should you have brain surgery if your doctor is recommending it? That's a really important question, and it's worth understanding the full picture before making any decisions.

The success rates for epilepsy surgery are actually more encouraging than 50/50 in many cases. For medication-resistant epilepsy, surgery has about a 70% chance of achieving seizure freedom — compared to only 5–10% with trying more medications. Doctors typically recommend surgery when two or three medications haven't controlled seizures. At that point, it's considered refractory epilepsy, meaning more medications are unlikely to make a significant difference.

There are also different types of surgery, ranging from more invasive procedures to minimally invasive options, so it's not one-size-fits-all. Here are some steps worth considering:

- Get a second opinion from an epilepsy specialist or epilepsy center
- Ask about all surgical options, including minimally invasive ones
- Discuss your specific seizure type, as success rates vary depending on epilepsy type and surgery type
- Weigh the risks of surgery against the risks of uncontrolled seizures, which carry their own serious dangers

Ultimately, this is your decision to make alongside your medical team. Feeling fully informed and comfortable before proceeding is completely reasonable.

August 25
A MyEpilepsyTeam Member

It's my decision what I want to do. I've went by what others tell me and learned, you know yourself better and what affects it. No way in ..... would i ever have a surgery done. Im grateful 🙏 my attacks are so much lighter than what I read. But when I was younger, it was to offen and to serious.

August 27
A MyEpilepsyTeam Member

I’ve tried the VNS and RNS, no improvements. Now we’re discussing the temporal lobectomy

August 27 (edited)

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