My 4 yr. old daughter is facing epilepsy surgery!Posted on 04/20/08, 01:58 pm
My daughter was diagnosed 13 months ago with complex partial seizures. She has been on several medications none of which have completely stopped the seizures. She was having 20-30/day, now that numbers has dropped to about 5/week. However, her neurologist is suggesting surgery because she is not handling her meds very well. She has had major changes in her behavior. I would love to talk to other parents facing a similar situation or someone that has had brain surgery. So many questions run through my mind ( and even more fears).
Reply #1 04/21/08 10:23am
i have just gone threw epilepsy surgery 8weeks ago i had suffered with epilepsy 25 years the surgery as been a great success and i havent had a seizure for 9weeks which is great for me the surgery as left me weak but i will get all my energy back as i heal no meds ever worked for me hope everything goes well with your daughter i also had a very good surgeon take care susanx
Reply #2 04/21/08 1:05pm
Hi nhumphrey, I started having seizures at 11 months old. I am now 27 yrs old. I suffered with complex partial seizures. I had surgery last January 12 months. I am now seizure free 15 months and counting. I am currently learning to drive. I was having a lot of seizures prior to surgery and I had been on numerous medications. If you would like to email me with your questions I would very happy to help you. Take care and god bless Raid ( Miriad from Ireland) xx
Reply #3 04/22/08 2:09pm
Reply #4 04/28/08 6:01pm
Like your daughter, I also started having seizures and taking drugs at three years old.
Unfortunately, that was a very long time ago and very few drugs or tests existed there was no option of brain surgery back then.
I started getting tests for surgery after a car accident four years ago. I had been completely controlled for ten years then suddenly ,out of the blue, had a seizure while driving and crashed the car.
Surgery was two years ago and since that time I've been completely controlled. I was on meds for one year after surgery making it 50 years of my life that I'd been taking AEDs.
Life is completely different when one doesn't have to worry about possible seizures and while I choose to focus on gratitude for the time I have seizure free, truth be told today's generation is luckier they can have the surgery at a younger age if needed.
Best wishes to you and your daughter..
Reply #5 06/28/08 1:48pm
I started having seizures when I was 2 years old. I'm 49 now and I had surgery in 2005. I have been seizure free since then. When I was growing up, my seizures were controlled pretty well, but in 2000, when I was 40, my hormones caused problems and I seizued when I was driving. Life changed a lot after that. I had a few more car accidents, my Neurologist worked with me, we finally agreed I needed to stop driving till my seizures were controlled. They started coming once a month, still enough to keep me from driving.
The best thing I ever did was have my surgery. I'm sure it seems like a very difficult decision fr your daughter, but think of this, it truly is easier for children to have brain surgery. Also, think of the years of seizures she will not have to deal with. It can be a life changing experience, trust me, it sure has changed my life, even at my age : )
I won't even try to tell you what to do for your daughter, but I will tell you that if I ever need brain surgery again I will go for it in a heartbeat. It was worth the long recovery, it was worth the pain in my head, it was worth all the pre-surgery tests, it was worth everything.
I have been totally seizure free since July 5, 2005 and it is awesome!
Reply #6 09/25/10 4:37pm
I had my first sez. when I was 40. My average sez laster 30 to 45 min. The doctors told me I had to have my surgery before they do me in. I had the surgery 6 years ago and I am great. The only reason I am on this web sight is to help you and other people. I am a design engineer and haven't lost any abilities. The best advice I can give you is this. Ask the doctors, all of them from the priamry to the surgen lots of questions so you have a full understanding of what is going on.
I know your daughter is younger than I am so you and your family try to have fun with this. My two teen age boys got the Dr to take pictures of my brain when he was operating so they could put them on face book. My favorite joke is this. I got fired from the Ice Cream stand because I can't make shakes any more. Please feel free to ask me anything you want to know
Good luck Bob
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This is for all who have had Epilepsy and have Surgery or are been considered for surgery .It is also for people who have had surgery and it has been successful or unsuccessful.