Which Of You Who Have Had Any Form Of Brain Surgery Would Not Do So If You Could Go Back In Time With The Knowledge You Have Now? | MyEpilepsyTeam

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Which Of You Who Have Had Any Form Of Brain Surgery Would Not Do So If You Could Go Back In Time With The Knowledge You Have Now?
A MyEpilepsyTeam Member asked a question 💭

I know that a few of my friends have expressed that if that had known before they had their first brain surgery what they know now, then they never would have agreed to it. Who else feels this way? How many feel that the brain surgeries have improved your quality of life?

I am not going into this eventual trip to the seizure center with any intention of agreeing to a brain surgery until there is no other options. I believe because my neurologist is at least in his late 60s, that he is very… read more

posted May 24, 2020
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A MyEpilepsyTeam Member

I started with the vns but it didn't help me much. I had it , for two years and then my neurologist talked to me about brain surgery.
I went threw along process to see if I qualified for the surgery. I had the surgery about a year later.

posted May 28, 2020
A MyEpilepsyTeam Member

First are You sure You can have brain surgery? I had the depth electrodes test to locate where my seizures were coming from. After that test was over it was discovered that if seizures come from both sides of a persons brain then no other surgical procedures can be preformed on a person.

posted May 24, 2020
A MyEpilepsyTeam Member

I think Mel78634 said it best,

“But what works for me may not work for you. It's a chance you have to take or not. You are not guaranteed it will work”

Whichever you decide to do, I hope that your Quality of Life is improved.

This is my experience with surgeries...

I would definitely NOT change having had either of my surgeries.

What I would change is the discussion/s I had with NeuroPace and my doctor before my 2nd surgery.

I would have been more diligent in how I slept after my 2nd surgery. I didn’t remember it being an issue after my 1st surgery so didn’t think about what could have happened. I now sleep on my right side. Not the case after I came home from surgery. I naturally slept on my left side.

Sleeping on my left side in conjunction with the burr hole in my skull not draining properly had a tremendous impact on my swelling that required hospitalization for three weeks to get it under control. Even with that experience though, I would not change it.

What I would change is what I paid attention to when healing. No I’m not blaming myself and I’m not blaming the surgery. I won’t go into detail but if you want to know just ask.

I feel I’m better off as a result of both surgeries.

posted May 24, 2020
A MyEpilepsyTeam Member

I had left temporal lobe surgery in 2010. Before the surgery I never had any auras and I was having 4- 5 every week or more. Afterwards I started having auras beforehand and now I'm down to maybe 1or 2 per month. For me the surgery was worth it and I would do it again. They told me it was not guaranteed to work. I took my chances after alot of prayers and talk with family and friends. Good luck with whatever your decision is. Praying for you.

posted May 24, 2020
A MyEpilepsyTeam Member

Before I had my brain surgery I was introduced to someone who had been through this. It worked great for him but I had a friend who works for the epilepsy foundation that it didn't work for. For me I have been seizures free for 11 years now.

posted May 24, 2020

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