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Upset and frustrated!

Wed, 06/13/2007 - 08:45
I am a candidate for surgery for ltl.I suffer from complex partial seizures weekly on scale from 1 to 20 a week (every week is different), I no longer have grand mals since I am now taking topamax along with tegretol. I still have a few more tests to do yet such as the fMRI, WADA and neuro-psycologicol exam, all to be done this summer. Then I will be informed on the percentage rate of risks and success the surgery would be if I still want to go ahead with it. I talked to a friend of mine a couple of days ago about this, hoping he would be happy for me, but instead I got "why would you want someone poking in your brain when you are fine as you are?" I nearly cried! but didn't of course. I listened to what he had to say because this is what I'll probably get from my own family when I tell them the news later, but only if I still go ahead with the surgery. He continued on "Do you still have big ones?" he meant grand mals, and so I said no but I do i partial seizures weekly. And he said "there JUST minor ones, why risk your life for JUST minor seizures? You get through them". I said they are not Just minor seizures trying to explain to him that these seizures I have are not just nothing. I was upset by his remarks but at the same time, i can understand why he saying this. He doesn't have E, he doesn't know what it's like, when he sees me I'm a perfectly normal human being just like anyone else he sees and cant understand why I would want to volunteer myself into brain surgery! I tried to expalin the benefits to him if I do undergo the surgery and all went well, but I dont think I did a good job of it because he still thought there was no need for me to have the surgery. I mentioned I could drive someday, not get upset when I have a seizure anymore, be more independant, do things without supervision such as swimming, dont have to feel fear of seizure anymore, side effects of medication anymore, have children with no medication on me hopefully, etc these are all possibilities with surgery, without it - I will always have problems. I can live with it if I really have to. But do I want to? So there you have it, my friend things they are nothing really, I get thru them as he did say, I can handle it in other words. But they are NOT nothing to me! Sorry for the long drawn out post, i just needed to get this off my chest. My partner has been very supportive on this whole issue and and when I told him whet my friend said he said that my family will probably react the same way, and so I have to be prepared for whats to come. Thanks for listening, any comments are more than welcome if you wish to share. Sorry again, for the long post, Quirky

Comments

Re: Upset and frustrated!

Submitted by tuckster on Mon, 2007-06-18 - 04:33
Our son is 12 and is due to have surgery in 6 weeks although it is very scary i think we owe it to him to give him this opportuniyy. So many people with E can't have surgery to fix it and although there are no guaratees the fact that you have so many seizures has to taken into account I say research it thoroughly make sure you have a good surgeon then make an educated decision The things that e stop you from doing are many and if there is a possible cure i say go for it but be aware of the risks or you will be forever wondering if things can be better. it does have an impact on your life and maybe your family dont understand this We vare lucky with very supportive people around us and our son nis actually looking forward to surgery i think he is just sick of the med side effects and seizures- between 21and 35 a week CP as well Be brave and if your partner is supportive draw your strength from him We will keep ypu in our prayers Cheers Tuckster

Re: Re: Upset and frustrated!

Submitted by quirky on Mon, 2007-06-18 - 09:06
Thank you tuckster for your support, very much appreciated. I will also be thinking of you and your son. I hope it all goes well for him. He is a brave kid! It's nice to see how supportive you are to your own son. He is only 12 years old, this is a fantastic opportunity for him, he has the rest of his life ahead of him, and if surgery goes well, its' the best thing you could have done for him in my oppinion :-) I'm 31 years old, been having seizures since I was 10. You have made me smile today tuckster :-) Thank you

Re: Upset and frustrated!

Submitted by twiggygun on Mon, 2007-06-18 - 12:44
i'm totally with you quirky. people who don't understand epilepsy act as if a grand mal is all that exists, and like your CPS is just a head rush from standing up too fast. you do not have to live with them if there is a chance that you can get rid of them, you just have to weigh the risks involved with the surgery. as far as your friend goes try to explain to them how incredibly frustrating it is to be 'gone' for a few seconds and that just like some of these other posters you could hurt yourself or someone else during that downtime.

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