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My surgery also resulted in memory and processing improvements
Has anyone had epilepsy surgery that resulted in mental improvements?
I have had Complex temporal lobe epilepsy with seizures beginning when I was about 13 years old. Doctors believed the epilepsy was created at 1 year of age when I suffered a high fever that climaxed with a seizure as I was rushed to hospital.
Medication changes over the years settled on Tegretol CR. I was largely controlled but didn't always take the medication well enough to be completely seizure free. At 22 years old I almost had the brain surgery to correct the condition. But on the way to the operating room stopped the surgery out of fear (It was 1981 and brain surgery seemed too scary to me). So I told the Dr. that I was going to be diligent about taking the medication and if that didn't work I would return.
Decades past with few seizures until I was 49 (2006). I started having seizures again and each visit to the hospital the doctor increased my medication level. He also suggested looking into the surgery which I knew would be an option so I said yes this time.
May 25, 2006 I had the surgery. Now my life was blessed with an amazing wife who for 28 years covered my mental deficits. I would describe myself as absent minded, very forgetful, easily distracted. Which sometimes made life harder for my wife.
Four days after the surgery I went home to recover. About 2 weeks after surgery I could go out for a few hours before needing to lay down. We were invited to our neighbors birthday party so I rested during the day and that evening we went. At this party of strangers (we didn't know the neighbor well), I was uncharacteristically chatty. I would usually sit at a party quiet because conversations were difficult to follow and stay focused on. After an hour of chatty conversation I looked around the room and realized I could name all of the people in the room (strangers before today).
In the coming days it became apparent that I had mental improvements. My thought processing speed seemed 2 or 3 times faster and I now had a memory power I had never had. It's as if I was smarter. I even figured out why. I wrote the surgeon and email saying: Is it possible, when you cut out this damaged spot of my brain, you cut out the cause of a life-long mental interruption?
Follow-up visits for the surgery were done and the doctor said they have never had anyone report mental improvements that lasted longer than a month. Mine have never left.
So it begs the question. Has anyone else experienced mental improvements after epilepsy brain surgery?
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Hi @restisaweapon
I am very happy to read your story and your improvements with this last surgery. I do also have temporal lobe epilepsy and some cogntive deficits. Curiosity, is your epilepsy on the left or right side of your temporal lobe? Is it also on the hippocampus? Thank you!
Have a nice week!
Chris (@santosha)
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1 ReactionMy surgery was done on the right temporal lobe. Not sure about it being on hypocanthus. That was never mentioned so I would say no
Hi @restisaweapon
Thank you so much for this information. Happy to hear that your epilepsy is on the right side and you could do such surgery. Celebrate it!!!
Curiosity, do you still need medication (AEDs)? Or are you free of them?
My epilepsy is on the left side of my hippocampus, and surgery would bring many cognitive losses and other harms.
Have a nice day!
Chris (@santosha)
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2 ReactionsThat’s interesting. During a follow up visit I asked the surgeon how much brain tissue he removed. He held one hand and held the index finger and longest finger together. Then wrapped his other hand around the two fingers leaving the top two knuckles of the fingers exposed. Saying that much. I said that looks like a lot. If you removed that from the memory part of the brain, how did I not lose memories. He explained “long ago your brain recognized the damage and didn’t put memory there”.
So I’m curious as to why that same area on your brain, causing seizures is also actively useful for motor function.
And to answer your medication question I still take the same dose of meds. Which was higher than I took before. When I started having seizures at 49 they upped my meds 3 times (after each of 3 seizures). I thought my mental deficits were because of the meds doping me. But it wasn’t. When the damaged spot was removed I experienced all the improvements regardless of the meds. They said staying on the meds is an insurance policy.
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4 Reactions@restisaweapon
Good Morning!
This is very interesting what your doctor said to you, thank you for sharing here with us. So, according to your doctor, you probably did put your memory on the left side of your temporal lobe because of your sclerosis on the right side of it. But this seemed not to work well as you had cognitive problems. So, by removing your sclerosis on your right temporal lobe, this part of the brain worked again properly, even though a part of it was removed.
What my neurosurgeon explained to me is that surgery on the left side of my hippocampus is a very risky one, because of the functions of the hippocampus on this side. It is recommended when it is a large sclerosis and mine is a very small one. There would be a high chance of cognitive impairment and loss of my verbal capacity. And I would be still dependent on AED, which do no good to me (I treat my epilepsy with medical cannabis, trigger management and diets). So I have learned to live with my cognitive decrease and adapted to it.
What I am still triggered is why this cognitive impairment just started after I was 47 years old, though I have had my epilepsy since I am a teenager? I have lived with epilepsy without knowing it until 2019 when I was 48 years old and I was diagnosed with epilepsy. Up to that time, I had a normal life, went to university, had my masters, worked in large companies, etc. My seizures up to that time were partial ones, rare, very mild, being out of myself just for very few seconds. But in 2017, seizures became stronger and my epilepsy started to show its face, starting to have some cognitive problems. When I asked my epileptologist why this happen all of a sudden, he answered to me that this was a result of untreated epilepsy for over 30 years. But I am still not very convinced with this answer, as he said that the size of my sclerosis (caused in an accident) remained unchanged all over those years. And from my studying, the sclerosis is the cause of the cognitive impairment people with epilepsy have. So, if I always had this sclerosis since my accident and lived without having cognitive problems for very long.
@restisaweapon, did you always had cognitive problems? Or did they start all of a sudden like it happened to me? I would very pleased if you and others in our group could share their cognitive problems with me. Did those problems appeared right after having epilepsy or did they start after some years living with epilepsy?
Thank you all!
Wishing you a nice Sunday!
Chris (@santosha)
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1 ReactionHi @santosha
I don't believe my memory moved from right lobe to left. The damaged spot on the right lobe was abandoned by the brain as a place to put memory. But there would still be right lobe space to use for memory.
I believe that the mental deficits I experienced were a result of the damaged spot of the brain emitting a static or interruption of some kind that made thinking more difficult. Specifically focusing. My memory was bad because difficulty focusing makes it hard to make a new memory. So memories were made better if I was well rested and able or motivated to focus. The mental interruption (for lack of a better word) I believe, was life-long after the 1 year old high fever that created the damage to the brain. At 13 years of age I started to have seizures. I think teenage hormones triggered the damaged spot elevating the activity to include seizures. Medication kept a lid on the seizures until I was 49 years old. Curiously, a friend of the same age started having seizures at the same time of life. I think the menopausal hormone changes triggered her. I wondered if there is a male hormonal change that triggered me?
Anyway after the surgery removing the spot. The thinking became dramatically clearer, faster and memory power present as well. I think the removal just allowed my brain to think without the mental interruption. My wife used to say going into a party or gathering (please talk to someone, it's embarrassing when you just sit there silent"). But I realized why after the surgery. Why get into a conversation where you lose focus and someone says to you "your not listening to me are you?". Better to avoid conversations where you'll end up embarassed.
The first party I went to (post surgery) I chatted with everyone in the room and, while they were strangers, I could remember everyones name an hour after getting there. The thought processing speed was faster now as well. I remember emailing the doctor saying "I think I could be in an improv comedy group because I'm thinking that fast". Two years later I took an Improv comedy class at a theater that ended with an Improv comedy show to a near full crowd lol!
Thanks, Don (@restisaweapon)
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5 ReactionsDear Don - @restisaweapon
Thank you so much for all the information you have shared. I am out this week on vacation and will read more carefully all precious information you have shared with us.
Wishing you a good week!
Chris - @santosha
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3 ReactionsHave a great vacation I’m going in a couple of weeks myself.