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Temporal lobe surgery
Tue, 07/28/2009 - 03:05Hello to everyone who lives with and loves a person with uncontrolled epilepsy.
My beautiful 9 year old daughter is due to have surgery on the 29th of Sept 2009. Whilst we are excitied about the prospect of, 70% chance of becoming seizure free - we are concerned about the issue of stroke associated with the surgery.
Has anyone experienced negative effects of the surgery?
Concerned mother. Regards, Anne-Marie
Comments
Re: Temporal lobe surgery
Submitted by Silver5 on Fri, 2009-12-11 - 14:12
Hi Aussie,
I live in the netherlands and have seizures for 43 years now (20-30 a month). Only the last year they found out that I could be operated. Here in holland you have to find your own doctor because most neurologists will give you medicines for the rest of your life. It is because someone told me to go to belgium and that they are futher with operations. Luckely for my they knew after the first consult that I could be operated, but I still had many research to go. Like MRI, PET scan and now the 25th of january 2010 the last test wich is the WADA test (i don't know if you know it?) It is to determine where your memory and speach is. On the left side of the brain (wich would be positive for me) or on the right side. I also feel two ways. One way says be happy they cán help you, the other says I am terrified how I will come out of surgery. Especially because I have had seizures for so long.
But I read that even if you have seizures for 44 years you can still be seizure free and without medicines? That would be perfect for me, because my doctor told me that the medicines would kill me after about 10 years. So lets think positive and hope that I will do just as good as you have done ;-)
Hi Aussie,
I live in the netherlands and have seizures for 43 years now (20-30 a month). Only the last year they found out that I could be operated. Here in holland you have to find your own doctor because most neurologists will give you medicines for the rest of your life. It is because someone told me to go to belgium and that they are futher with operations. Luckely for my they knew after the first consult that I could be operated, but I still had many research to go. Like MRI, PET scan and now the 25th of january 2010 the last test wich is the WADA test (i don't know if you know it?) It is to determine where your memory and speach is. On the left side of the brain (wich would be positive for me) or on the right side. I also feel two ways. One way says be happy they cán help you, the other says I am terrified how I will come out of surgery. Especially because I have had seizures for so long.
But I read that even if you have seizures for 44 years you can still be seizure free and without medicines? That would be perfect for me, because my doctor told me that the medicines would kill me after about 10 years. So lets think positive and hope that I will do just as good as you have done ;-)
Re: Temporal lobe surgery
Submitted by bella0809 on Sun, 2010-04-25 - 22:52
I had szs for 36 years before surgery. I had the surgery 4 years ago, have had ZERO seizures since then and as of March 1, 2010 I am medication free as well. It's never too late for surgery.
I had szs for 36 years before surgery. I had the surgery 4 years ago, have had ZERO seizures since then and as of March 1, 2010 I am medication free as well. It's never too late for surgery.
Re: Temporal lobe surgery
Submitted by akewbc on Thu, 2010-08-05 - 20:40
Its been 3 1/2 months already since my surgery after going to the MAYO for help--(an early 60th birthday gift)- I've been trying to find other folks here in Alaska that have spent time in Minnesota to go through the same things I did-so far no luck. I do want to let you and any of the others going through evaluation for surgery that I am thinking every positive thing I can to make it happen for you - Looking forward to an awesome Christmas message from you.
Its been 3 1/2 months already since my surgery after going to the MAYO for help--(an early 60th birthday gift)- I've been trying to find other folks here in Alaska that have spent time in Minnesota to go through the same things I did-so far no luck. I do want to let you and any of the others going through evaluation for surgery that I am thinking every positive thing I can to make it happen for you - Looking forward to an awesome Christmas message from you.