My surgery also resulted in memory and processing improvements

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)

My 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)

That’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.

@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)

Hi @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)

Dear 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

Have a great vacation I’m going in a couple of weeks myself.

Good Morning Don - @restisaweapon
Now, I had the time to read your post with attention and time for it. Thank you so much for sharing your story with me and our group!
You said that your seizures started at 13 years of age, though your fever which is the cause of your epilepsy happened when you were 1 year old. This is quite similar to my experience. I was 5 years old when I had the accident that caused my epilepsy, but started to have my seizures at my puberty. What I have learned through a doctor is that there is latent or silent period of epilepsy before the first seizure happens. She also said that my puberty was the onset for my seizures due to hormonal changes, similar to you.
Here is a short explanation of the latent/silent phase of epilepsy.
"After a brain injury occurs, there is frequently a "silent" or "latent period" lasting months or years in which seizures do not occur;[6] Canadian neurosurgeon Wilder Penfield called this time between injury and seizure "a silent period of strange ripening". During this latent period, changes in the physiology of the brain result in the development of epilepsy. This process, during which hyperexcitable neural networks form, is referred to as epileptogenesis."
I am very happy to hear that your surgery was a great success. I can well understand why you kept silent in gatherings. While taking some AEDs, I got so confused that I avoided contact with people, keeping just contact with my husband and parents. Thankfully, this is over for both of us 🙂
Wishing you still a very nice week!!! Enjoy life!
Chris (@santosha)

I have a few occupations one of which is a Window cleaner. I started this company out of necessity but discovered it was a super great job. So peaceful and made money with almost no expenses. Anyway one day, almost years ago, a while after my surgery, I went to clean the house of a local doctor. During the job I got talking with the doctor and my surgery came up. He lit up with excitement and led my around the back of the house and pointed at a building behind the home. "That was Dr. Penfield's neurological center, and this was his house". It was so cool to see it. When I was young there used to be commercials about famous Canadians and one of them was about Dr. Penfield who in 1956 first pioneered the epilepsy surgery. The commercial showed actors recreating the first surgery. The doctor is probing the brain, while the patient (awake) responds when he touches the area that evokes her aura of smelling burnt toast.
Here is the video link