Surgery/Glenda (Mercyme)

  Hi Glenda, I hope you recieved my e-mail and that it will be helpful to you.  I would have the brain surgery again in a heart beat.  It has been such a blessing to be able to drive again and live a "normal" life.  I have three daughters, all are in good health and do not have seizures.  I haven't went back to work, because I am now doing volunteer work, speaking at support groups of people with seizure disorders.  I feel blessed that I can give back and help others understand and deal with their epilepsy.  I wish you the best!

   Cindy

Dorothy-

Just reading your post... I'm thinking, right-o... you hit the nail on the head.  That is exactly what I'm thinking.   How many times have I been out somewhere and  I said to myself... Oh, NO... I feel it coming....and I want to escape because I know the seizure is going to happen outside the safety of my home.   I feel  vulnerable...

A perfect example is when I was just about done with my physical exam and I was sitting on the exam table, in my little gown, and the doctor was talking to me.  She is a super nice person and was talking about who knows what, I don't remember... I had a  CP right there.  

Well, she had gotten up and was standing at the counter looking down at the desk looking into my chart trying to find something, and talking to me the whole time and  she didn't notice it.  I was fighting the feeling the whole time, trying to supress what I was feeling.  It lasted about 60 seconds or so.  When I was coming out of it, she looked up at me and said something like, " What do you think of that?"  And, of course, I didn't know what in the heck she was talking about. 

My brain was scrambled at the time and all I could remember was shrugging and nodding my head.  I think she was puzzled but it apparently was an acceptable answer, as she patted me on the shoulder and told me to get dressed.  She probably thought I was acting really weird.   I didn't want to tell her I had a seizure! Just more explaining to do! 

God, ...the surgery is worth it so I don't have to go thru ANOTHER episode like that...

When people say, " I HOPE you don't need the surgery."  I know they mean well.  But to tell you the truth,  I hope that I DO need the surgery to fix it.  That way, it will be done and over with.  I agree with you 100% Dorothy.  NOBODY sees it thru your eyes.              (maybe except your fellow sufferers!)                                                    Glenda                                                     

Well,  You know,  I had a video EEG last Sept. and the neuro showed me the video and EEG of me having the seizure and I watched myself... I couldn't believe it was me!!!  I immediately thought - " so this is what other people see"  Boy, oh, Boy.  That was a real eye opener.  It made me want to sign up for the surgery right then and there. 

Since my sister had come to pick me up from the hospital, my husband didn't see the video with me and when I went home and I told him, " why didn't you tell me that's what I looked like when I had a seizure!!!"   He said, " don't worry, Honey, it's not that bad."  But, to me, it wasn't pretty.  I mean, it wasn't ME.  

So, yes, I feel that I have cold feet too, Dorothy, but I think when all is said and done I am going to do as the lion, tinman, scarecrow, and Dorothy did... march down to see the Wizard, maybe a little shaky, but I have to do it , especially if I want to get back to Kansas!!!!

My neuro tells me my risk of complication is higher if do nothing. If I  Just take the meds and let the natural course of the illness progress.  My seizures may become stable...no better, no worse, or they may get worse and everything else will get worse - memory, cognition, coordination, headaches (can that be much worse?).    So,  I'm projecting myself beyond the surgery, Dorothy.  I'll be there with you.  You can bet on that.        

Glenda