Newbie

[Rambo_Sambo]

Hey there. Just wanna introduce myself.
I've had complex partial seizures since I was about 12 and I was diagnosed with temporal lobe epilepsy when I was 15. Since then I've tried a multitude of medications. So far no combination has controlled my seizures at all. I'm still having 3 or 4 a day. At the moment I'm on Keppra 1500mg 2x daily, Lamictal 200mg 2x daily and Vimpat 200mg 2x daily. The side effects of the meds drive me insane, especially since they have no effects on my seizures.

My neurologist has now suggested surgery is probably my best shot at becoming seizure free, but the whole concept terrifies me! I was hoping someone around here would be able to share their experiences with epilepsy surgery.

Any advice would be awesome!

 

[Nakamova]

Hi R_S, welcome to CWE!

There are a quite a few members with advice to offer about surgery. I'm sure you'll hear from them. In the meantime, you might want to check out these threads:
http://www.coping-with-epilepsy.com/forums/f41/considering-brain-surgery-18579/
http://www.coping-with-epilepsy.com/forums/f41/temporal-lobe-epilepsy-surgery-new-here-2489/
http://www.coping-with-epilepsy.com/forums/f20/epilepsy-surgery-success-story-14850/
http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/
http://www.coping-with-epilepsy.com/forums/f41/epilepsy-surgery-636/
http://www.coping-with-epilepsy.com/forums/f41/nervous-about-surgery-15471/
http://www.coping-with-epilepsy.com/forums/f41/epilepsy-brain-surgery-5719/
http://www.coping-with-epilepsy.com/forums/f36/epilepsy-surgery-14570/

Also, you might want to look into neurofeedback to see if it's an option, before making the jump to surgery. More info here: http://www.eeginfo.com/research/epilepsy_main.html and here http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova

 

[Cint]

Hi R_S, welcome to CWE!

There are a quite a few members with advice to offer about surgery.

I'm one who has had a temporal lobectomy and was only seizure free for 14 months. However, I had my surgery over 20 years ago and the damaged part of my brain causing the seizures was deep in my hippocampus, so they couldn't get all of. I was like you Rambo, I had tried numerous meds and was having 4-5 CP's a day. Before you go under the knife, read as much as you can about neurosurgery, pros and cons. There is NO turning back! It can cause severe memory loss and it can cause a stroke or make seizures worse, depending. Or, it could make seizures dissipate. No one knows for sure until two years. That is usually the point where the docs consider it a success or not.

Check out this website for more info and types of brain surgery:
http://www.epilepsy.com/epilepsy/surgery
http://www.epilepsy.com/epilepsy/types_surgery

Also, ask your neuro about the VNS. I had that surgery, too. Some folks on CWE are adamantly against the VNS, but it did work for me as a last resort.
Check out this website:http://us.cyberonics.com/en/vns-therapy/

 

[CQ:)]

Hi R_S,
Welcome to CWE.
If you do decide to look into surgery do as much research as you can into the surgery. I see you are from Sydney, did the neurologist suggest which hospital he would like you to have the surgery?

I had epilepsy as a baby & took Tonic clonics until I was 3 years old then no more seizures until 2002 when I was 24. After my seizures returned I took auras & partial seizures, when I had MRIs done it showed up I had scarring on my left temporal lobe (most likely from the seizures I had as a baby) & I was diagnosed with temporal lobe epilepsy.
My Neurologist tried me on 5 different meds & since 2004 I have been on at less 2 meds at a time but none of the meds controlled my partials.
In 2009 when my Neurologist tried me on a 5th med (which he added onto 2 other meds I was on) he told me there wasn't much more he could do so suggested I look into surgery & referred me to an epitiologist.

I was referred to epitiologist Prof Sam Berkovic who works at Austin Health in Heidleberg. I saw Prof Berkovic in June 2010 then went through the pre surgery tests to see if I was a candidate for surgery. In November 2010 I found out I was a good candidate for surgery.
On 10 March 2011 I had my surgery at Austin Health where the neurosurgeons removed the scarring on my left front temporal lobe. I did have a good recovery & only had a couple of very minor issues which I was able to get through with the support of my epilepsy nurse & neuropsych. I haven't had any seizures or even auras since surgery & am currently aiming to go 2 years seizure free.

 

[jyearta]

Hi and welcome,

I have the same type of E. as you. I have been put on all the meds. out there, but I had to go back to Dilantin and Clonazepam was added.

I hope you find the forum to be helpful.

 

[Rambo_Sambo]

I see you are from Sydney, did the neurologist suggest which hospital he would like you to have the surgery?

My neurologist referred me to the epilepsy center at Prince of Wales in Sydney. My referral was to see Prof Ernest Somerville but when I went for my first consultation (about a week ago) I saw a Dr Laue-Gizzi. She was fantastic.