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Considering Surgery

Mon, 01/17/2005 - 11:30
Topic: Surgery and Devices
My 15 year old son's neurologists want to send him to an epilepsy clinic (UCLA) to evaluate him as a candidate for surgery. Right now I am very against him having any surgery and so I am not in favor of this evaluation. Is there any benefit for having the evaluation for surgery even if you have no intention of ever having the operation. Here's some background. My son has been diagnosed with left temporal lobe, partial complex seizures. He's currently on Trilepal and Keppra. He's only tried two other meds. Right now he's developed a pattern to where he will go seizure free for 2 to 3 weeks. Then in about 3 days, he'll have several seizures. The worst has been 4 in one day. Then will go seizure free for a couple more weeks. He started this pattern since he's been on the Keppra last May.

Comments

RE: RE: RE: RE: Considering Surgery

Submitted by 38benny on Sat, 2004-11-27 - 11:50

I TOTALLY AGREE WITH WHAT YOU SAID - I HAVE TEMPORAL TOO - AND AFTER ALL THE RESEARCH I'VE DONE OVER THE YEARS YOU ARE TOTALLY CORRECT....

I CAN UNDERSTAND PEOPLE BEING HESITANT - BUT GIVE YOUR CHILDREN A CHANCE AT LIFE WITHOUT THE FIRE BURNING IN THEIR BRAIN... I'VE BEEN LIVING WITH IT SINCE HAVING MENNINGITIS AT NINE MOS. OLD AND HAD MY PARENTS KNOWN THEN WHAT THEY KNOW NOW - THEY'VE TOLD ME TIME AND AGAIN THEY WOULD HAVE DONE ANYTHING TO STOP THE HURTING - THINK ABOUT YOUR CHILD - THEN YOURSELF! I KNOW PEOPLE WILL BE ANGRY WITH ME FOR SAYING THAT  AND I APPOLOGIZE BUT UNTIL YOU LIVE WITH NOT KNOWING WHATS GOING TO HAPPEN TO YOUR BODY SECOND TO SECOND DAY TO DAY YOU CAN'T POSSIBLY IMAGINE THE HELL THAT IT PUTS PEOPLE THROUGH - WALK A DAY IN THEIR SHOES... AND THEN THINK AGAIN OF YOUR OPTIONS... SURGERY IS A RISK - BUT A GOOD ONE

I TOTALLY AGREE WITH WHAT YOU SAID - I HAVE TEMPORAL TOO - AND AFTER ALL THE RESEARCH I'VE DONE OVER THE YEARS YOU ARE TOTALLY CORRECT....

I CAN UNDERSTAND PEOPLE BEING HESITANT - BUT GIVE YOUR CHILDREN A CHANCE AT LIFE WITHOUT THE FIRE BURNING IN THEIR BRAIN... I'VE BEEN LIVING WITH IT SINCE HAVING MENNINGITIS AT NINE MOS. OLD AND HAD MY PARENTS KNOWN THEN WHAT THEY KNOW NOW - THEY'VE TOLD ME TIME AND AGAIN THEY WOULD HAVE DONE ANYTHING TO STOP THE HURTING - THINK ABOUT YOUR CHILD - THEN YOURSELF! I KNOW PEOPLE WILL BE ANGRY WITH ME FOR SAYING THAT  AND I APPOLOGIZE BUT UNTIL YOU LIVE WITH NOT KNOWING WHATS GOING TO HAPPEN TO YOUR BODY SECOND TO SECOND DAY TO DAY YOU CAN'T POSSIBLY IMAGINE THE HELL THAT IT PUTS PEOPLE THROUGH - WALK A DAY IN THEIR SHOES... AND THEN THINK AGAIN OF YOUR OPTIONS... SURGERY IS A RISK - BUT A GOOD ONE

RE: RE: RE: RE: RE: Considering Surgery

Submitted by jackieoh on Sat, 2004-11-27 - 15:24
Hi!  Brain Surgery the two scariest words in the english language when put together.  I know because my husband just had it two months ago.  I am begging you to at least go for the appointment and hear what they have to say.  Your right there are no guarantees, but are there ever in life?  My husband is 31 years old and is so angry at his parents for never having taken him to a specialist to try and find a cure.  They always trusted the doctors and told him time and again that this was his cross to bare in life and he would just have to live with it.  He dropped out of college in his second year because unlike high school everyone was not aware of his "situation" and people would mock him or ignore him because he was a freak, he had little to no self-esteem and it took me to chase him to even get him to ask me on a date (after a year).  Give your son a fair chance.  I promise you it is not an easy road but one that I believe worthy of exploration.  My husband is doing well so far (he is already back to work).  His self-esteem is through the roof right now.  I hope that it works, but at least we know we tried.  (by the way, my husbands seizures were not so bad when he was a teen, he would have a lot but they got worse over the years and last year I had to give him CPR three times to keep him alive).  Epilepsy does not usually get better, there is a huge risk of brain damage when there is a loss of oxygen.  Be careful, don't end up regretting the past like my in-laws, I really feel bad for them.  I wish you the best and hope it all works out. 

RE: RE: RE: RE: RE: RE: Considering Surgery

Submitted by 38benny on Sat, 2004-11-27 - 15:46

JACKIEOH - THREE CHEERS FOR YOUR HUSBAND!!!   

 I was 21 when they diagnosed me so I know how it feels to go through school feeling lost and alone with no one there to stand up for you.  Everytime I told the school nurse I wasn't feeling well she thought I just wanted to get out of class -  and I too had to leave college after only a year because of the rising medical costs.  Thankfully  ten years later, I have a new lease on life after my surgery and my confidence level - like your spouse's is also through the roof.  ** as a side note I went back to my old jr. high and told the school nurse to start paying closer attention to the kids aches and pains - not all of us are liers - **  











JACKIEOH - THREE CHEERS FOR YOUR HUSBAND!!!   

 I was 21 when they diagnosed me so I know how it feels to go through school feeling lost and alone with no one there to stand up for you.  Everytime I told the school nurse I wasn't feeling well she thought I just wanted to get out of class -  and I too had to leave college after only a year because of the rising medical costs.  Thankfully  ten years later, I have a new lease on life after my surgery and my confidence level - like your spouse's is also through the roof.  ** as a side note I went back to my old jr. high and told the school nurse to start paying closer attention to the kids aches and pains - not all of us are liers - **  











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