Hi,
My Neuro keeps encouraging me to consider epilepsy surgey. He has run a bunch of tests on me earlier this year, and now I just have to decide whether or not I want to do it, but I want to get some feedback first of how it's helped others out there first and find out what are all the risks involved???
Anyone know? Thanks! :)

Hi DIVA,

I had surgery almost two years ago and I am still trying to decide if it was a good idea. I no longer seem to have complex-partial seizures, but was not able to stop any of the AEDs, just partially reduce the dose of one of the three I take. I also have had some very suspicous sleep events - my signs during a night seizure are not obvious, I just wake up sometimes damp from sweat and sometimes feeling weak the next morning. My surgery was with the left-temporal lobe, and I tell you my memory both short and long term is now the pits. It can be really frustrating to hold a conversation sometimes and I end up feeling like an idiot, usually. I also have slight headaches and wierd head sensations that I never had before. What personality I had before has really changed - fresh start, yeah tell that to my wife!

Good luck to you!

kodo

Hi. I had surgery back in 1998 - right temporal lobe. All went really well for a while. the surgery was a success. i was off medication and driving again. I ended up having another seizure but it comes from a different area, so the surgery worked. I had my operation done at Yale New Haven Hospital by Dr. Dennis Spencer.
I would definately do it again.

I persoanlly have not had surgery. but i know people who have had it. they had there surgery done at the Cleveland Clinic in Ohio. They have a wonderfull adult epilepsy wing there. They were the ones who found out what caused my epilepsy. It might not hurt to look up the cleveland clinic, even if it is just to find out info.

Hi! I had epilepsy surgery in 1990 at the Cleveland Clinic and was a complete success. I had complex partial seizures prior to surgery, which were getting worse (was on 3 different meds). I had 5.5 inches removed (couldn't remove all of the areas causing seizures) and have had no seizures since surgery. I'm also not on any medications. I quit taking those in 1998 when I start trying to conceive.

HTH! If you'd like to know more about my story, please let me know.
Good Luck! I'd obviously do the surgery over again in a heartbeat. Changed my life!

L

I appreciate everyone's replies. 4th of 4, I would love to hear your story on how you got off your meds! My husband & I are wanting to start a family. He's not getting any younger either if you know what I mean! :D

If you could email me, I'd appreciate it!

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Thanks so much!



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Im actually about to have surgery to get rid of my seizures on monday Sept 19th. From what I understand surgery can't cure epilepsy but it can prevent seisures. What they do is they remove the part of the brain that is causing the seizures. Since not all epilepsy cases have the seizures originate in the same part of the brain not all people with epilepsy can have this done. Recently I worked at a summer camp for epileptic kids. There was a camper there who had the surgery and even showed me pictures of the piece of his brain they removed. Even after the surgery getting off of meds is a very slow process and can take 2 or 3 years

Ethan

:) Hi! I Had surgery for complex partial seizures of the right temporal lobe in 2001 at Emory Hospital in Atlanta. I still take meds b/c I occasionally have auras, but I am seizure-free. I would do it again if I had to! At the time, I did not realize how much the seizures were interfering with my life until I stopped having them. The whopper of a headache you have after the surgery is not fun, but the the recovery is fast. I was out of the hospital in 3 days and feeling pretty much like myself again after 2 weeks. I took 3 weeks off of work b/c my family and boss told me to! Good luck to you! Dr. Gross is a wonderful surgeon.

KS

I'll give a very brief history first: had complex partial seizures from age 8-18 when I had surgery (at the Cleveland Clinic, 1990). My surgery was a little different, I think, in that they did testing while I was admitted (in addition to the 1 yr of testing prior to surgery to see if I was even a candidate). I had plates placed directly on my brain and all of the EEG wires (about 75 of them) came out of the top of my head and was hooked up to the 24 hr EEG monitor. They discontinued all medication (I had been on 3 different kinds at the time) and let the seizures roll and recorded them. The neuro surgeon was about 90% sure where most of the seizure activity was coming from but wanted to be 100% sure so they implanted an electrode into my face (I still had the other plates on my brain) around my mouth and it went into the back of head and was placed at the base of my brain for more testing. They continued to record seizures. They got the info they needed (I had many different areas causing the seizures but the surgeon felt he could take out as much as he could without harming me permanently, however, he didn't think I would ever be off of medication) and mapped my brain for the final surgery. They removed 3.5 inches on the right side (scar tissue) and 2 inches on the front (lesion). I stayed in the hospital for another week and then went back home. I was in the hospital at CC for 1 month. I stayed on Carbatrol XR for 8 or 9 years (can't remember the dosage) and never had another seizure after the surgery (still haven't). I decided to try and come off the medication before I started trying to conceive my daughter and with the help of my neuro. I slowly decreased the meds (with routine EEG's) and finally came off of them. I've never looked back since. A month after I quit taking the meds, I was pregnant. So, I wasn't given the best prognosis but I did better than they ever expected. Off meds and no seizures. Like I said before, it's the best thing I've done in my life (and my parents).

My neurosurgeon and neurologist both left CC about a year after my surgery. My surgeon was Dr. Isaam Awad and my Neuro. was Dr. So. I have no idea where they are now but they were wonderful.

HTH all of you! :) If you decide to go for the surgery (assuming you are a candidate), I wish you the best. Let me know if I can help any further.

Take care,
4ht of 4