Kinda freaked out

CDC funded page

Not a CDC funded Page

At my last neuro appt. I got the feeling that he wanted to cut into my brain. I know that everyone who has gotten brain surgery and has come out on top, sing nothing but it's praises. You never hear about the ones that didn't help. Those are the ones that I'm interested in hearing a little about.

Comments

Re: Kinda freaked out

Submitted by Cathy Vargas on Fri, 2007-05-11 - 20:39

Rosegirl,I've had epilepsy for 31years now and they are't touching my brain.My doc.told me no matter how good the surgeon is there will always be one side of your body slower than the other usually the opposite side of where your brain is affected.He told me my seizures would still happen and I would still have to take meds.So why in hell would I want them to operate on me?He also said the steadiest hand can slip and I could be paralized the rest of my life.I think I will go on living by taking my meds and living a half way normal life than to try living being slower on one side or paralized or dead.At least this way I can still walk,talk and eat by myself.I know 4 people who had the surgery and not one every came back to their old selfs.They all seem to come out with still having seizures and a differant personality a mean one.well I hope I help you out.cat

Hi rosegirl, It isn't

Submitted by solis on Sun, 2007-05-13 - 21:58

Hi rosegirl, It isn't difficult to find statistics on the various types of epilepsy surgery (and in all cases there is a % that has no change whatsoever) eg. Temporal Lobectomy: "After surgery, 60% to 70% of patients are free of seizures that impair consciousness Consciousness State of awareness; if consciousness is preserved during a seizure, the person can respond (either in words or actions, such as raising a hand on command) and recall what occured during the spell. 20% to 25% of patients still have some complex partial or tonic-clonic seizures but the number of seizures is reduced by more than 85%" 10% to 15% of patients have no worthwhile improvement." http://www.epilepsy.com/epilepsy/temporal_lobectomy.html Medical statistics on the result of other types of surgery also can be found at: http://www.epilepsy.com/epilepsy/types_surgery.html You will also read of the percentages not helped via the various surgeries. After coping with E for over 40 years I had surgery a year ago. I'm now working my way off meds and so far, to my knowledge, no seizures whatsoever. As I did not respond to medication surgery was my only chance. Yes there is a definite risk, but such is the case with everything in life, & I'm glad I opted to try. Hi Cathy, I'd be willing to bet that your doctor is a general neurologist ,as opposed to an epileptologist (one who specializes in epilepsy). No general neurologist ever got me controlled, it took an epileptologist to get me there. It was not until after I lost that control, & I knew what I'd been missing, that I was willing to try surgery. Sorry but I am NOT physically slower on the opposite side of the brain from my surgery. In fact, the side opposite to where surgery was preformed is my dominant side and is stronger. If my personality was affected due to the surgery, it's likely that I smile more now as I no longer spend 1/2 the time petrified about when my next seizure will occur. Moreover, none of my family & friends have noticed any personality change. I completely respect the fact that not all want surgery, and I definitely believe it should be up to the individual. Not all surgery works, so yes there is a risk. But sometimes, to some people, that risk is worth taking. wishing you both the best, ~sol

Re: Hi rosegirl, It isn't

Submitted by rosegirl on Thu, 2007-05-24 - 15:27

By no means am I knocking surgery nor am I making fun of those who have had it. It just seems that my doc who, yes is a neuro not an epileptologist, just wants to cut into my brain. I have the VNS implant and that is working out well for me. While I may not be going off my meds as soon as we had hoped I am happy right now. But when my doctor throws the idea of surgery out there and expects me to say "Of course! Sign me up!", it freaks me out instead. Me and my parents decided that only when all else fails, then we will go for surgery. (It doesn't help that I'm really self-conscious and have hair that I love)