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Surgery...How do you decide?
Tue, 09/16/2008 - 09:58I know opting for surgery is a personal decision, but I just want to explore other's experiences...
My son, 12yrs, has partial seizures, some Simple, some Complex. He's on two meds, both causing cognitive side effects, which of course makes learning difficult, plus makes things difficult for him socially. We've never gotten full control of his seizures... Sometimes they come daily, sometimes every two weeks. We're at the end of the Medications options... No more to try.
Do we just live with partial seizure control, or do we continue to strive for full control with Surgery. It seems so scary to me... I just want to do whats best for my son.
If you've had the surgery, please share your experience, OR if you've considered surgery, but opted against it.
Thank you so much, Val
Comments
Re: Surgery...How do you decide?
Submitted by RTL on Tue, 2008-09-23 - 22:04
How did I decide? Possibly not with the same criteria that would apply to a 12 year old, but I have documented the process below:
http://users.eastlink.ca/~kehoe/
Kevin
How did I decide? Possibly not with the same criteria that would apply to a 12 year old, but I have documented the process below:
http://users.eastlink.ca/~kehoe/
Kevin
Re: Surgery...How do you decide?
Submitted by kazza on Wed, 2008-09-24 - 05:47
Hi Val,
The New Zealand Health Board has me currently on the waiting list to have a left-temporal lobectomy. My neuro has tried to talk me into it for over 10yrs now, but have only recently said OK after I suffered a 3hr grand mal attack. I find it incredible the no. of people on this site that have had surgery for simple partials which are so easy to live with, just no license! It is such major surgery - it is your brain!
In my decision making, the hospital has put me in touch with a few past cases. Most have turned out great but to me many seem to have just replaced 1 problem with another, in that they have lost the ability of short term memory. For example, they can go down the stairs and forget what they went down for.
The hospital was actually nice enough to introduce me to NZs greatest disaster case, in order to let me see the worst possible outcome before I went under the knife. Im really glad they did but it was not nice.
She is supposed to be the only 1 that has ever had such severe effects but it shook me. She is still not able to work 4 years later and is still having speech therapy today as she was unable to speak when she came out. Her cps and sps are now gone and is stable in the day but has 2-3 grand mal attacks every week in bed.
She is blind in her upper right eye and cannot remember her wedding or various other events in her life. Her short term memory is also damaged and I had to repeat a lot of what I said as she forgot what Id said earlier. She still has difficulty to read or spell and has had to start again right from scratch.
I don't want to be the horrific pessimist! But do know that it is major surgery that your son will undertake and there is no guarantee it will work. I've been given a 50-60% success rate and they seem to think thats good enough. I am sitting on a waiting list now shaking in my boots! Cps are incredibly difficult to live with though and we need to do what we can to stop them. They have ruined my life and I have always had them. Your son will probably still stay on meds after they will just be decreased, but the side effects will therefore ease which will be great as that is whats making me think of going ahead with it. Im sick of finding it difficult to stand up for at least an hour after taking my morning dose, esp when I still get seizures.
As the surgeon said: "Its unlikely you'll be any worse off considering the strong side-effects you're suffering"
Love, Karen xx
Hi Val,
The New Zealand Health Board has me currently on the waiting list to have a left-temporal lobectomy. My neuro has tried to talk me into it for over 10yrs now, but have only recently said OK after I suffered a 3hr grand mal attack. I find it incredible the no. of people on this site that have had surgery for simple partials which are so easy to live with, just no license! It is such major surgery - it is your brain!
In my decision making, the hospital has put me in touch with a few past cases. Most have turned out great but to me many seem to have just replaced 1 problem with another, in that they have lost the ability of short term memory. For example, they can go down the stairs and forget what they went down for.
The hospital was actually nice enough to introduce me to NZs greatest disaster case, in order to let me see the worst possible outcome before I went under the knife. Im really glad they did but it was not nice.
She is supposed to be the only 1 that has ever had such severe effects but it shook me. She is still not able to work 4 years later and is still having speech therapy today as she was unable to speak when she came out. Her cps and sps are now gone and is stable in the day but has 2-3 grand mal attacks every week in bed.
She is blind in her upper right eye and cannot remember her wedding or various other events in her life. Her short term memory is also damaged and I had to repeat a lot of what I said as she forgot what Id said earlier. She still has difficulty to read or spell and has had to start again right from scratch.
I don't want to be the horrific pessimist! But do know that it is major surgery that your son will undertake and there is no guarantee it will work. I've been given a 50-60% success rate and they seem to think thats good enough. I am sitting on a waiting list now shaking in my boots! Cps are incredibly difficult to live with though and we need to do what we can to stop them. They have ruined my life and I have always had them. Your son will probably still stay on meds after they will just be decreased, but the side effects will therefore ease which will be great as that is whats making me think of going ahead with it. Im sick of finding it difficult to stand up for at least an hour after taking my morning dose, esp when I still get seizures.
As the surgeon said: "Its unlikely you'll be any worse off considering the strong side-effects you're suffering"
Love, Karen xx
Re: Surgery...How do you decide?
Submitted by Adisney990 on Wed, 2008-09-17 - 20:01
I can speak from personal experience on this one. My parents were faced with the same delima. My seizures started out in the tonic clonic/pettit mal/day dreaming (whatever you want to call it) phaze. I started at 12 y/o with maybe 1 or 2 a week. The seizures progressed to 45 "small ones" a day and maybe 1 or 2 grandmals a week. Granted, this had a lot to do with me. I refused to take my medication because I couldn't stand the side effects. However, they were getting worse and it was definitly creaping into the life threatening stages. My parents discussed the pros and cons with me and asked for some input. I, of course, jumped at the idea because I wanted the chance to live a normal life. I can say that I'm completely cured and for that I am greatful but nothing comes without a price. In having the surgery I also gave up all of my memories. My earliest memory was at the age of 13. I do live on my own now and I've got two beautiful children but my memory issues still bother me today. I have trouble keeping a job because of it. Honestly though, if I had it to do over again, I would. I know your son is still pretty young, but I would ask him how he feels about it.