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Life After Left Temporal Lobe Surgery - Desperate for Input
Wed, 05/16/2012 - 10:45Topic: Surgery and Devices
My 27 year old son had is left temporal lobe removed two years ago. His seizures started at 19, quickly became severe, uncontrolled with medication. Medication didn't completely control seizures - candidate for surgery. Had the surgery one semester prior to graduating from college. I notice an immediate change in his personality within 24 hours of his surgery. It was as if his social filter was lifted. He has not had anymore seizures, can drive, and managed to graduate from college, with some difficulty. The problem is that now when he does get a job, he cannot keep it due to memory issues. If the job (geology is his major) is very straightforward, say data entry, he can perform perfectly. However, when learning a new software or learning anything new for job, he cannot retain it. The prior intelligence is there and I feel he is capable of learning new things, but he needs more time than the normal new hire. He has been fired or quit several jobs now. He cannot seem to make an intelligent judgment call about anything. Runs away from adversity. He is just a completely different person. I just want to see him hold a job in the field he worked so hard for, or in any field for that matter, just so he is self sufficient. He just gets focused on one idea and cannot seem to see around it. I hope this makes sense. He is easily angered, more aggressive, went from being the always super polite gentleman to refusing to do anything he doesn't want to do. He is on the maximum doseage of Keppra and I am hoping his neurologist will start to wean him and see if that will help. I spoke to a psychiatrist about seeing him and he indicated that ADHD meds could help with concentration and cognitive ability. It's just that I have been trying to tell his doctors for a year that he's not right and they are just now starting to listen! my son can't go into an appointment and tell them how screwed up his memory is because he doesn't know he has "Groundhog Day" moments and repeats himself. He is scheduled for post-op neuropsych testing in six weeks. Thank you for any insight.
Comments
Re: Life After Left Temporal Lobe Surgery - Desperate for Input
Submitted by vitasg on Thu, 2012-05-17 - 11:39
Thank you so much! Funny, he had gotten a job as a geotech and was fired for not learning the job fast enough. I contacted his employer after he was fired (they didn't know he had epilepsy surgery) and she told me she suspected something was wrong with him. I was mortified. I'm starting to lose faith in my son and in everything. I try to keep in mind that he was never a slacker and this isn't "him," but I'm so frustrated. I am his only advocate, so I can't give up on him. Thank you for that reminder.
Re: Life After Left Temporal Lobe Surgery - Desperate for Input
Submitted by lstokes on Wed, 2012-05-16 - 14:48
Hi,
Glad to hear surgery was successful. I would be concerned with keppra causing the personality change. Anti-seizure meds do cause short term memory problems. I am going through the same struggles with 32 year old son trying to get book keeping diploma. He also had same surgery as your son. Eliminated absence seizures but not tonic clonic so my son takes primidone and trileptal as a secondary drug. No side effects but I do remember him having problems with keppra. Hope that this helps you with your son in some way. It isn't straight forward for sure.
Re: Life After Left Temporal Lobe Surgery - Desperate for Input
Submitted by Melissa77014 on Wed, 2012-05-16 - 14:46
Reading your post and feeling your pain. I have a 32 year old son who has had two brain surgeries. Having cognitive and memory issues also. He graduated from college, with some help of a wonderful advisor. Worked as a geotech for awhile after college but lost the job before he had his 2nd surgery and he certainly could not do that job now. Working as a cashier at Target. At this point, I am not certain that he remembers how wonderful his life was before. He does not drive so his schedule is my schedule.
We are on three different medications. We recently changed to one that has affected his personality and his ability to communicate. Trying to switch back to one of the other drugs. After his second surgery, I thought the surgeon had implanted some comedy genes as the kid was just funny as hell. Since this new drug, that part is mostly gone.
Of course now they want him to come back in for another stay in the EMU, where the studies always come back "inconclusive". If he can't think through the curtain in his brain to agree to Phase I, I know he will not agree to Phase II.
The neuropsych testing will be helpful. At least you have a good baseline with the before testing, right?
There are alot of medications out there. Our son has been on almost all of them. Looking forward to listening to this new roundtable discussion I saw on the web site today.
It sounds like you are his best advocate - keep it up. Read everything you can and don't think that your doctor has the ultimate answer. I had to go to NYC with our son to get another perspective. It has been 2 years since his last surgery and we are still dealing with seizures. Science just hasn't caught up with us, yet.
All the best to you and your son
Reading your post and feeling your pain. I have a 32 year old son who has had two brain surgeries. Having cognitive and memory issues also. He graduated from college, with some help of a wonderful advisor. Worked as a geotech for awhile after college but lost the job before he had his 2nd surgery and he certainly could not do that job now. Working as a cashier at Target. At this point, I am not certain that he remembers how wonderful his life was before. He does not drive so his schedule is my schedule.
We are on three different medications. We recently changed to one that has affected his personality and his ability to communicate. Trying to switch back to one of the other drugs. After his second surgery, I thought the surgeon had implanted some comedy genes as the kid was just funny as hell. Since this new drug, that part is mostly gone.
Of course now they want him to come back in for another stay in the EMU, where the studies always come back "inconclusive". If he can't think through the curtain in his brain to agree to Phase I, I know he will not agree to Phase II.
The neuropsych testing will be helpful. At least you have a good baseline with the before testing, right?
There are alot of medications out there. Our son has been on almost all of them. Looking forward to listening to this new roundtable discussion I saw on the web site today.
It sounds like you are his best advocate - keep it up. Read everything you can and don't think that your doctor has the ultimate answer. I had to go to NYC with our son to get another perspective. It has been 2 years since his last surgery and we are still dealing with seizures. Science just hasn't caught up with us, yet.
All the best to you and your son