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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

Hi Quirky. I don't

Submitted by tlh64 on Thu, 2007-06-14 - 15:14
Hi Quirky. I don't know what you do during your CPS, but they are definatly not being "fine", as he thinks you are. They are upsetting to go through. Becoming unconsious (sp?) and doing possibly harmful things to yourself while in that state is not a minor thing. Getting first and second degree burns on yourself while doing something as simple as cooking a pot of pasta is not a minor thing. THat is what I did to myself during a CP seizure late last December and was in the hospital for 4 days. I poured a pot of boiling water on myself. Just let him know that you could injure yourself during a CP seizure and that the surgery is your chance of eliminating that danger. tlh64

Re: Hi Quirky. I don't

Submitted by quirky on Fri, 2007-06-15 - 10:16
Thanks tlh64, It's so true, whenever I am cooking, and if I suddenly feel the CPS, I try to stand well back from the gas cooker. But if I was holding something at the time, then it would be a different story, like in your case when you injured yourself cooking. So sorry to hear that. I have been fortunate that has not happened to me. But I do know what you're talking about. I was chopping vegetables one day and a CPS came on as I was chopping, and I was all confused and nearly chopped my finger off! My partner saw me right there wondering what was I thinking, and then he realised I was having a CPS. The mobility in my right arm and hand goes numb, very hard to control, and my awareness goes with it. Thank you for the support. I didn't actually think of telling him this at the time. I was just a bit stunned by his remarks. I wanted him to be happy for me. But instead i got lots of questions. I was not prepared. I know it's because he cares. Thanks again.

Re: Re: Hi Quirky. I don't

Submitted by peppermintpatty on Mon, 2007-06-18 - 02:33
Hi, You need to ask yourself a question.Do you want a chance of a life with no siezures or at least less siezures or do you want to get the opinions of those around you...who love you and who care for you but who doen't have a clue of what you go though daily when you have a siezure or wondering when the next one is coming or wishing you could drive and etc.I did both when I had my brain surgery and I had 2 young boys too.And it was I who made the decision by what I felt I eeded to do. That is what you need to do or if you don't you will regret not listening to you own feelings and start thinking what if this or what if that. Peppermintpatty

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