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Kinda freaked out

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

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

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

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)

Hi rosegirl, I don't blame

Hi rosegirl,

I don't blame you one iota for being freaked out.
And the idea that an MD would suggest the risk of surgery (there is always a risk) to someone who is well controlled already makes no sense.

best wishes with the VNS implant,
~sol

Re: Hi rosegirl, I don't blame

Well I hadn't seen my doc for a long time and had had 3 seizures that seemed all clustered together. But other than that my seizures are under control. I get my seizures around my period either before or after usually and this time I had one before and one after. So that's probably why he threw the idea of surgery out there.

Re: Kinda freaked out

Hi Rosegirl,
I personally think people take surgery too lightly. And I mean those people who want to go in for surgery because they had enough. Enough of dealing with seizures. I was one of them. They dont know the full out come. Sure you have people who become seizure free, but there are many who have to go through hell too.

I have had a surgery starting in 94. I had to go through two brain mappings. Then I had to go through surgery four times. I am not seizure free, but I have decreased about 15 seizures a month. But my life came to a halt, for 94, 96 and 97.
I just thought I will go in and I will become seizure free. I went in the first time with a very big positive attitude. Well that screwed me. For I went into a major depression for seven months when I came out and was turned down the first time.

People want to walk in get surgery, get seizure free and thats that. But it dont always happen that way. People need to be aware. I am not trying to scare you. I am trying to make you and others see that there could be so many other issues involved. Dont go in with saying you are going to be seizure free. Just hope that you get a decrease and you will be on the safe side. Even my surgeon said, people go in with the thought of being seizure free and end up with major depressions.

Surgery is not all its cut out to be, by some who have been seizure free. For some had surgery and became seizure free. I am sure there are many who had to go through hell to get there too. I think that is wonderful, and I truly wish them the best.

But you have gone the right direction to look at those who didnt become seizure free and what did they have to go through. I mean there are other issues. What happens after surgery. What side effects do we have? I have some issues, memory, finding words, typing some of my words or letters. So there are issues involved.

I am not pushing you away from surgery. But my suggestion is take your time and truly prepare yourself. For sometimes it can be a long process.

You have started the smart way of looking into brain surgery. The negatives first then the positives. Sure there are many who became seizure free and are doing well too. But there are many who just had a decrease, or go through surgery several times.

I want to wish you the best in making your decision.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach1/
http://health.groups.yahoo.com/group/epilepsyapproach/
http://www.sleep-safe.co.uk/id90.htm

Re: Re: Kinda freaked out

Thanks for all that info. My parents are the ones who see it as going in with seizures and coming out seizure free. I can see myself going in with seizures and coming out not knowing who my parents are(and bald). They're the ones who are glass is half full, sometimes more than. I'm the one who looks at things and sees them for what they are or I definitely look at the negative side before I see the positive.

I've already gone through a depression and I really don't want to relive that again. I'm afraid of losing memories, from when I was little to the present. Things like when me and my sister would stay up until midnight talking about whatever. I'm also afraid that I might come out worse than when I came in.

You haven't scared me away from surgery. I'm doing a fine job of that by myself :) Although you aren't seizure free, I'm glad that your seizures had decreased.

Re: Re: Re: Kinda freaked out

Hi Rosegirl,

I suffered a lot with Complex Partial Seizures.Like Sol I had brain Surgery there on the 4th January just gone.My Seizures were getting worse and I felt I had no control whats so ever. so I decided to go for the surgery as I was told by my Neurologist that It was unlikely that they were ever going to control my seizures fully under control with anticonvulsants. I had tried so many and I was getting sick of it.I had a Craintomny and a partial hippocampectomy done on my left temporal lobe. Sorry for the bad spelling. Since I had the surgery I have had no seizures whats so ever. In relation to what you said about the memories I didn't really loose any memories. My memory wasn't great before I had surgery anyway so having the surgery hasn't effected it too badly. My life has totally changed and I feel like a totally new person. I am so glad I made the decision to go for the surgery.
Take care

Raid.

Re: Re: Re: Re: Kinda freaked out

Hi there --
My 5 year old daughter is scheduled for a temporal lesionectomy on July 19th. She has focal cortical dysplasia which is causing her complex partial seizures. They plan to resect that area. Surgeon feels he can get it all without consequences to her -- it is mostly in her anterior temporal lobe. We feel very fortunate that we have this option for her. Surgery is a scary prospect -- but if you trust your medical team and she is a good candidate, you need to really consider it.

Are we scared? You bet. Have we been up and down an emotional rollercoaster making this decision? Absolutely. But, we are at a place where we know this is her best option at being seizure free or greatly reducing frequency and duration of the seizures.

Good luck to you in making this decision. Please everyone send positive vibes our way on the 19th if you could. Congrats to all of you who have had successful surgeries...you are an inspiration!

Re: Kinda freaked out

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