epilepsy brain surgery

[generic]

Hello, I had 6 brain surgeries in 2006 and my epilepsy doctor has suggested possibly having epilepsy brain surgery to remove scar tissue which is causing the seizures. Do you guys think this is a good idea??? Any advice would be greatly appreciated. Thank you...

[LivingFruity]

Hi Welcome to CWE!!!

Take the time to make yourself at home and have a look around. I'd check out some alternative approaches before going under the knife again. Many people have had wonderful success with neurofeedback. We're able to control my son's seizures with proper diet and cranial therapy. His are also caused by scar tissue remaining on the brain, but his scar tissue is from a stroke not surgery. When we closely monitor his nutrition, he doesn't seize.

It's great to have you here

[Bernard]

You've already had 6 brain surgeries and your doc/surgeon wants to perform #7 now?

I'm not an expert on the subject, but I have read about it. From what I understand, all you are doing with these brain surgeries is replacing natural* scar tissue with surgical scar tissue. Only, it takes about 2 years or more for the brain to heal from the surgery. Many of the studies done on the efficacy/safety of brain surgeries only followed patients for ~6 months. Some longer term studies spanning up to 10 years have shown that the odds of seizure activity reoccurring increase after 2 years.

Only you can really judge the pros/cons of another surgery given your current situation, but if it were me, I'd be looking into other, non-invasive alternatives (see chart linked in my signature).


*natural is not meant to indicate good, just differentiate from surgical

[vtsammy]

I had a craniotomy because I had a scar tissue on my left temporal lobe. After slicing me open they found out that my scar tissue was too far back where my speech comes from so they thought it was too much of a risk. Why they couldnt' tell me this before I had the surgery your guess is as good as mine. But yes, I would be very reluctant to have a 7th brain surgery. What types of brain surgeries have you had anyways?

[Belinda5000]

generic,
I had brain surgery in 1982 to remove scar tissue on my RTL.
Unfortunately my seizures were also on my LTL also and they won't operate on both sides but they didn't know at the time it was on both sides.
Are your seizures just coming from one side?Or R they on both sides?Why would u want to have a 7th surgery I'd definitely say NO.


Belinda

[garfieldlea68]

Hi
My Name is Leah and I just want to say I'm also facing surgery ( I'm highly allergic to every seizure medicine that is out ) I am scheduled for a WADA test in march after that my doctors will get together and do what's best for me

The only medicines I can take are Lyrica,Ativan,Zonegram

[Cint]

Generic,

I had a left temporal lobectomy in 1990 and was seizure free for 14 months only. Then the seizures came back with vengeance. I've tried 11 different medications, to no avail.
And as Bernard said,all they are doing is creating more scar tissue, surgical scar tissue. So I would be very, very cautious about having a 7th brain surgery.
They wanted to do a 2nd brain surgery on me, but the scar tissue was too deep and I would lose my speech abilities if it were performed.
Another thing with left temporal lobectomy, it effects my speech and memory. I suffer from aphasia and have bad memory lapses. I also have to deal with depression, which was brought on by the surgery.

Have you asked your dr. about the VNS? It isn't a cure all, but maybe it can help. It helps some, others it didn't work. For me, it has reduced the seizures significantly.

Good luck in your decision!

Cindy

[flinnigan]

Hi Leah, I too am scheduled for the WADA March 5. Let me know how yours goes and I'll do the same. Good Luck.

[garfieldlea68]

Hi Cint My name is NOT generic My Name is Leah (I get slightly annoyed )
I have some of the best doctors where I live and they are going to try to do what's best for me

[garfieldlea68]

my WADA test is scheduled for march 4

[Cint]

Well, Leah,
I was responding to another person who had posted a message concerning another brain surgery, prior to your message and the name that is by their avatar is "generic". There are other postings prior to yours.

BTW, I hope you have a good outcome with your surgery, if your WADA comes out ok.

Cindy

[garfieldlea68]

To Cint Just want to say I'm Sorry. Seems like everyone has been actually Throwing Bernard's list at me I Just can't take the medicine doctors normally give out

[garfieldlea68]

ignore my moment of madness please!!!!!!!!!!!!

[garfieldlea68]

To Finnegan
Will Do

[flinnigan]

Hey Leah been thinking about you all day. Hope all went well. God Bless.

Paula

[garfieldlea68]

Well here's my update everything went o.k . they were running late with me (Here's the downside )They spent 2 hours poking at me to get a vein,the nurses always have a hard time with me plus I had EEG leads on my head (Last time I had them on I had a seizure and ripped them out of my head in the hospital ) good thing I was on camera

[flinnigan]

Sorry about the pokes. Mine went well too. It's a weird test. They took really good care of me. I think I'll slow down my surgery and try some natural means. I'm not nearly as bad off as many of the people on this site. Take care.

[mgoblue50]

Generic, are you having the surgeries in the North or the South? Does the titanium you have hurt? Mine does.

[mgoblue50]

Leah, how long in between your surgeries did they wait?
Jen

[garfieldlea68]

Actually I've been going through memory testing,(Because of my cerebral palsy)that lasted 8 hours My doctor is very through. when I was in the hospital for a week I spent 1 night without my meds and that night I had 11 seizures back to back even pulling the EEG wires out of my head and not knowing it until the nurse asked about them
P.S I know this is not answering your question but it give you an idea of what I went through