Surgery/Glenda (Mercyme)

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mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 3/2/2005 3:36 PM (GMT -7)   
 
 
  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

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/2/2005 10:24 PM (GMT -7)   
Thanks Cindy! I sent you an email too. I would love to be "normal" again.

Isn't it funny that when you say to people the words "brain surgery" they say,"Ohh, that's horrible!!!". But if you say,"gallbladder surgery" they say, "how soon can you eat a steak and cheese sub."
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/3/2005 3:11 PM (GMT -7)   
Mary-

You deserve a really EXTRA BIG HUG ! ((((((((((((((((((((((((Mary)))))))))))))))))))))))

Glenda
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 3/4/2005 7:38 AM (GMT -7)   
Yep.... Those words " BRAIN SURGERY " can give you looks.... I hate to tell anybody I am considering getting surgery..... they think .. I need a shrink instead, they say... Why... you have no problems.... they say... you are fine... why do you need brain surgery.....
 
They dont see all the pills I take everyday.... they dont see me crying for no reason, they dont see me, worrying about going out when I am tired, they dont see, my memory deteriorating, well... then again... that is noticable ... so that they do see.....
 
They dont see the fear of having a seizure while talking to the kids teachers.... Or not being able to get a job, because I am scared, of  " spaceing out " ..... This is not seen....But then again... I cant make money... staying at home... So what am I to do... I enjoy being out... I enjoy being around people..... Yet.... Why get Surgery.... I am fine..... For someone that is 38 years old..... I am not fine.... That is why I need Brain Surgery....... :-)
 
I guess this is why.... We have to do ... What we feel is best for us... and not everyone else.... :-)
Feel good :-)
diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/6/2005 9:11 PM (GMT -7)   

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  :-)                                                    


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 3/7/2005 7:07 AM (GMT -7)   
Hi there !!
 
Thank goodness, I am not the only one !! Not that I want to see anybody else go through these odd experiences, but at least, it does make us all feel better :-) ...
 
Ohh ... I am so confused... My " Space outs " have been so good lately... with the exception of a few... My dad is very sick... I have been traveling every other day to see him in the hospital... This is draining me to the max.... I told my husband the other night on our way... darn... Im exhausted... But I know I have to go, because I dont know how much longer my father has sad ....   Any way.... I had an " Space out " on the way... of course I wasnt driving..... but I am scared.... I have been doing so good....I know this is happening, because I am upset, I am tired and stressed......
 
This is what I am confused about though..... after seeing my father in the hospital , watching him die, I am scared to go in myself...... I am starting to get cold feet..... I am scheduled for the video eeg in 2 weeks and I am getting nervous already, that they are going to tell me YES go for it..... I want it... But I am getting scared I am going to be a vegetable.....
 
I guess Dorothy is turning into the Cowardly Lion !!!!
 
Thanks for listening eyes .... I just been thinking and up at night too much lately !!!

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/7/2005 9:59 AM (GMT -7)   
Cowardy Lion (a.k.a. Dorothy)-
 
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
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/7/2005 10:05 AM (GMT -7)   

p.s.  I forgot to say....About your Dad

I'm so sorry you are having to deal with that too. Dads are precious and its so difficult to see  it happening in front of you.  Sorry he has to go through that.  Sorry you have to go through that too.  sad

You need an extra, extra, extra big hug. :-)  

((((((((((((((((((((((((((((Dorothy))))))))))))))))))))))))))))

Glenda


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

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