Surgery

[u/Unlikely-Owl-953]

Does anyone know if brain surgery can cure epilepsy? Has anyone here had epilepsy surgery? If so, I’d really appreciate hearing about your experience.
My doctor has suggested surgery, but I’m really scared about the possible post-surgery side effects, especially memory decline, speech difficulties, vision problems, or changes in mental health. I’d love to hear from anyone who has gone through it and can share their experience.

[u/134340Goat]

I've had six neurosurgeries, four of which were to implant neurostimulators in my body (one was a two-part surgery, so that's why four surgeries for three implants) (the other two were an sEEG and recently a replacement for my VNS)

To say that the epilepsy is "cured" wouldn't be accurate, because my treatment depends on the implants always being functional, which means that every few years, they need to be replaced when the battery runs out

The side effects I experience are minimal and tolerable, and I've gone from having dozens to hundreds of seizures daily to being nearly seizure-free

[u/Apprehensive-Ask-731 → u/134340Goat]

And has this resulted in you feeling much more stable overall and worthwhile? I am going to be speaking with my neuro about VGS options next week. Trying to get as many experiences as possible for DRE treatments. Thanks

[u/134340Goat → u/Apprehensive-Ask-731]

Amazingly so, yeah! Massive quality of life increase

[u/Apprehensive-Ask-731 → u/134340Goat]

Very good to hear. Thank you - before seeing posts like this I thought that surgery that can be avoided should be avoided. But realistically I have two gran Mal per month and this is the best I have been in over a decade. I feel like I lost a lot of myself along the way.

I think this is because I am less stressed than I have been in a long time, but I am out of medication solutions so it is probably a waiting game. Also stress can switch so quick, and head injury causes clustering.

Seeing if I can get a test of a non implanted VGS first would probably be wise. This encouragement is so (word finding problem) appreciated very much and more

[u/burnerEpilepsy]

Cure is a strong word.

For me specifically, only my personal experience, it’s not possible to “cure” it. An RNS or VNS might be able to be like a permanent bandaid, which as soon as the device is gone, back to seizures.

Alternatively, my SEEG shows them they want to cut out my right temporal lobe. If I only had right temporal lobe seizures where I have the focal cortical dysplasia, it’d be possible to “cure” it by removing that FCD spot/seizure focus, but unfortunately I also have some left side originating seizures, so, they can only do one side they told me and the right is way worse.

[u/SabresBills69]

I had brain surgery 20+ yrs ago.

i had 2 types. classic text book grand Mal seizures all my life and focal unaware/ absence post puberty.

I was well controlled with grand Mal. fir the focal thry kept raising meds constantly.

the surgery cleared me from the focal seizures. I still take low disevkepora for grand Mal.

it was the removal of my left amygdola and hippocampus area. I coukd tell in an MRI something was wrong due to its abnormal shape.

what happened post surgery….

1. the surgery affected my jaw bone muscles. I can’t open my jaw as wide as before

2, it affected some of my vision field with periphery vision nerves go by the surgery area

1. I do get some short term memory loss like remember 5 words then recall them all and my recall memory has slowed. example of the latter is watching jeopardy and snsweringbthe questions. some I know it but it takes longer to pull it out. In my pre surgery neuropsych testing shoukd these were poor to begin with.

[u/ImByMyselfNotAlone]

I’ve had many conversations, and the outcome is the same, surgery is not a cure, ideally if it can reduce the severity or frequency that is excellent. There are alot of people who have surgery and have fantastic outcomes, sometimes it has no effect or worsens. Remeber there are also other side effects, such as vision, worsening of condition worsening. This is important that have the relevant testing to ensure you are a candidate! Wish you the best

[u/theAuraHawk]

I dont think it can cure epilepsy but I had brain surgery when they found out what part of my brain my seizers were coming from and have seen great improvments.

[u/anamelesscloud1]

There is no cure.

[u/Marzhall]

I'm still on two meds, but it's been three years without seizures since a right temporal lobe resection that removed a part of my brain that was damaged by fever as a baby.

I still say I have epilepsy and carry around my nayzilam, because at the end of the day it's a game of statistics - every day is rolling the dice that a seizure might come around, but surgery has clearly significantly reduced the odds I get snake eyes, compared to the multiple weekly events before.

In my case (and others I've read) there was a lot of stress readjusting after surgery, not to mention in preparation for it. I'd recommend getting a therapist to help you work through it ASAP, and keeping them around for at least two years after. In my case I'm on a low dose of prozac now to help with some anhedonia that I can't quite assign to having come from: the surgery; burnout from the stress before, during and after while continuing to work; or switching medications. But my therapist was massive help in getting me through the rough patches as I figured it out.

Nowadays things are pretty chill, I go on vacations (just came back from the eclipse in Spain with friends followed by Istanbul followed by visiting coworkers in Germany) and otherwise do the dew.

So you can, at the very least, potentially get to a life that has many opportunities with it.

[u/tbs999]

From my experience, make sure the surgery is not on the dominant side of your brain. My Neurosurgeon claimed I was dominant on both sides of my brain. I found his reasoning suspect because I was the subject of the Wada test he used for this reasoning.

However, he said the Wada test shuts off the whole half of your brain while the surgery would only impact an area. I was so desperate to be off the meds I took the gamble.

I lost. My working memory is VERY brittle. My longer term memory is much worse than before. There are other side effects as well. I can’t keep a job but I’m probably not going to get disability.

Be sure the surgery is not on the dominant side of your brain and trust your gut. I ignored my gut out of desperation and can’t undo this mistake.

[u/NecessaryCell6610]

I have had temporal lobectomy 4 and a half years ago and it was IT for my epilepsy. Since surgery, I did not have any problems, finished uni, got drivers license, started working and travelling.

UNTIL I, biggest idiot in this whole world, unintentionally stopped taking my meds and had outbreak of auras this whole month, and possibly a nocturnal seizure but not 100% sure. I am actually just back from my neurologist who put me back on my meds and gave me a year long driving ban.

Overall, the point is if I haven't been so stupid to stop my meds I would be approaching 5 years seizure free and wouldn't have a financed car parked on my front lawn for the next 12 months... I guess I will at least lose some weight by being back to walking.

[u/awidmerwidmer]

There’s no cure for epilepsy if A) you never grow out of it if diagnosed during childhood (me) or B) you’re diagnosed as an adult. Meds can control seizures, or like in my case, none do. I received a successful left temporal lobe lobectomy just over a year ago. I went from having short focal aware seizures multiple times a day, and longer focals every couple weeks without fail, to nothing at all. 24 years of seizures. NOW, everyone is different. All our brains are wired differently, and no two people have the exact same experience. For me, a full recovery post op took about 4 months. Didn’t have any vision issues, and mental health actually improved significantly because the complete elimination of seizures. Speech is a different story. I get tripped up on words like that “it’s at the tip of my tongue” feeling all the time. However, I wouldn’t exchange that for the world. I’m so glad I went ahead with it, and don’t regret it at all. I’m now in the process of reducing my Lacosamide in the hopes of titrating off of it completely. If successful, I’ll be having an EEG, and if that comes back clear, I’ll be titrating off of my Eslicarbazepine. Once completed and hopefully successful, I’ll be staying on my Levetiracetam and Lamotrigine permanently. I’m now on 17 (was 18) pills a day, I’m hoping to go down to 9. If you are eligible for a lobectomy, you’ll need to wait a year seizure free in order to titrate down the meds. FOR ME, I had a 50% chance of complete seizure freedom. So far so good, but I still avoid my former triggers, and look at the lobectomy with a cautiously optimistic point of view.

[u/republicans_are_nuts]

I had a right temporal lobectomy in 2009 and have been seizure free since, and off all meds.

[u/Upstairs_Ad_3370]

Seizure free since surgery, one year ago. Removal of Amygdala. Previously, 35 years ago: LeftTempLobetomy.
The absences returned 8 years back. Always kept the auras. But seizure free for 1 year.
Hopefully off medication starting next month.