Right temporal lobe surgery, removal of the right Hippocampus.

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Hello, My name is Lee. My Daughter, who is 36, started having seizures abou 3 years ago. She has been on many medications, but they do not control her seizures. That is when the Doctors considered her for brain surgery. First, the Doctors tested her on everything to see if she is a good candidate for surgery. Well, it turns out that she is a good candidate. My Daughter's name is Lori. All of her seizures are coming from the right temporal lobe. They have given her a 65% chance of being seizure free. The problem is this... my Daughter is really scared that it will effect her memory even more, or worse, effect her emotions. I would like to get feed back from anyone that has had this surgery. I would like to know the pro's and con's of your experience. I would greatly appreciate this. I am very concerned for my Daughter.

Thank You!!

Concerned Mom!

Comments

My memory is slowly dieing

Submitted by Jason Worth on Sun, 2017-10-29 - 20:22

My memory is slowly dieing from having Seizures long term over & over again anyway. I'd give up all my memory to not have anymore Seizures. They can kill us too. My Seizures started when I was 6, now 32 years later I'm Seizure free.

Hi Lee. I can both relate to

Submitted by broesti on Fri, 2017-11-24 - 03:55

Hi Lee. I can both relate to and understand what you and your daughter are going through. When I was 36, I had my first surgery. At 35, I was diagnosed with epilepsy, having complex partial seizures, stemming from a cavernous angioma in my right temporal lobe. According to my wife, I was having upwards of 10 seizures per day lasting anywhere from 10 seconds to 3 minutes. After a year of trying different medications and combinations of medications, my doctors at Cleveland Clinic decided that my seizures were intractable, or resistant to medication. At this point, I was told that my only hope of stopping seizures would be to undergo surgery...a right temporal lobe resection. However, based on all of my neurological tests, the doctors presented me with the option of removing the angioma or removing the entire lobe. I chose to remove the angioma. For nearly 5 years, everything seemed to be going well. Then, the auras started coming back to me with more intensity and seizures soon followed. I was back in the hospital, and last year I had my right temporal lobe, hippocampus, and amygdala removed. To my knowledge, I have been seizure free now for a year. I will admit that I have had small auras here and there, but nothing like before. I have had my battles with headaches and depression as well. For me though, my biggest battle is with short term memory. Long term, prior to my first surgery and the height of seizure activity, is crystal clear. Epilepsy has significantly impacted my life. I was a very successful and rising professional. Now, however, I am having difficulty trying to figure out who I am and "re-invent" myself. I am married, with 3 children, and although my memory struggles are difficult on my whole family, it is much better than the scare and concern that each one of my seizures gave them. Even though it is hard, and I struggle daily, I wouldn't change my surgical decisions. My memory problems bother me, but not nearly as much as my seizures bothered and scared my family.

Hi Lee.  I can both relate to and understand what you and your daughter are going through.  When I was 36, I had my first surgery.  At 35, I was diagnosed with epilepsy, having complex partial seizures, stemming from a cavernous angioma in my right temporal lobe.  According to my wife, I was having upwards of 10 seizures per day lasting anywhere from 10 seconds to 3 minutes. After a year of trying different medications and combinations of medications, my doctors at Cleveland Clinic decided that my seizures were intractable, or resistant to medication.  At this point, I was told that my only hope of stopping seizures would be to undergo surgery...a right temporal lobe resection.  However, based on all of my neurological tests, the doctors presented me with the option of removing the angioma or removing the entire lobe.  I chose to remove the angioma.  For nearly 5 years, everything seemed to be going well.  Then, the auras started coming back to me with more intensity and seizures soon followed.  I was back in the hospital, and last year I had my right temporal lobe, hippocampus, and amygdala removed.  To my knowledge, I have been seizure free now for a year.  I will admit that I have had small auras here and there, but nothing like before.  I have had my battles with headaches and depression as well.  For me though, my biggest battle is with short term memory.  Long term, prior to my first surgery and the height of seizure activity, is crystal clear.  Epilepsy has significantly impacted my life.  I was a very successful and rising professional.  Now, however, I am having difficulty trying to figure out who I am and "re-invent" myself.  I am married, with 3 children, and although my memory struggles are difficult on my whole family, it is much better than the scare and concern that each one of my seizures gave them.  Even though it is hard, and I struggle daily, I wouldn't change my surgical decisions.  My memory problems bother me, but not nearly as much as my seizures bothered and scared my family. 

Hi Lee. I can both relate to and understand what you and your daughter are going through. When I was 36, I had my first surgery. At 35, I was diagnosed with epilepsy, having complex partial seizures, stemming from a cavernous angioma in my right temporal lobe. According to my wife, I was having upwards of 10 seizures per day lasting anywhere from 10 seconds to 3 minutes. After a year of trying different medications and combinations of medications, my doctors at Cleveland Clinic decided that my seizures were intractable, or resistant to medication. At this point, I was told that my only hope of stopping seizures would be to undergo surgery...a right temporal lobe resection. However, based on all of my neurological tests, the doctors presented me with the option of removing the angioma or removing the entire lobe. I chose to remove the angioma. For nearly 5 years, everything seemed to be going well. Then, the auras started coming back to me with more intensity and seizures soon followed. I was back in the hospital, and last year I had my right temporal lobe, hippocampus, and amygdala removed. To my knowledge, I have been seizure free now for a year. I will admit that I have had small auras here and there, but nothing like before. I have had my battles with headaches and depression as well. For me though, my biggest battle is with short term memory. Long term, prior to my first surgery and the height of seizure activity, is crystal clear. Epilepsy has significantly impacted my life. I was a very successful and rising professional. Now, however, I am having difficulty trying to figure out who I am and "re-invent" myself. I am married, with 3 children, and although my memory struggles are difficult on my whole family, it is much better than the scare and concern that each one of my seizures gave them. Even though it is hard, and I struggle daily, I wouldn't change my surgical decisions. My memory problems bother me, but not nearly as much as my seizures bothered and scared my family.

Daughter who is 41, mother

Submitted by barbaracurtis12 on Wed, 2018-03-07 - 04:56

Daughter who is 41, mother and wife is having right temporal lobectomy on Friday. Reading all the comments helps us to better understand the journey ahead of her and how we can help her. Thank you for your stories. Blessings