Has anyone had a temporal lobectomy, resulting from epilepsy?

Posted by allie12345 @allie12345, Feb 13, 2012

Has anyone had a temporal lobectomy, resulting from epilepsy?

Hi my name is Paul. I had a temporal lobectomy and hippocampus surgery in 2001 at the mayo clinic. I’ve been seizure free since, and med free since 2004. I would be happy to answer any questions you might have.

REPLY

Good afternoon. I had this surgery in 1983 at Mayo Clinic. A lot has changed since that time and there has been many improvements to the procedure. For years, previous to 1983, nobody could figure out what was going on with me. 34 years with no problems since then. I don’t know where you live but a trip to Mayo Clinic could change your life. Good luck to you and ask any questions.

Liked by Jamie Olson

REPLY
@doughboy47

Hi my name is Paul. I had a temporal lobectomy and hippocampus surgery in 2001 at the mayo clinic. I’ve been seizure free since, and med free since 2004. I would be happy to answer any questions you might have.

Jump to this post

Was this on your left side or right side?

REPLY

I had a right temporal lobectomy June 2016, but I still have complex partial seizures, just not as strong. I’m looking into having something else done. I tried to say, “I don’t want to reduce it, I want to get rid of it.” I was told then that I would soon be able to be taken off my medication. But now, a full year later, I’m still on my same dose of meds. I’m not trying to have you rethink your decision. I’m just telling you that there is still a possibility it may not succeed expectations. I also had a VNS done which still had the same outcome.

REPLY

Hello @bellap, Welcome to Mayo Clinic Connect. Thank you for sharing your personal medical information.

The thread that you posted to, is an older thread, but the members are still active. While we wait for response from them, you may be interested in reading this article from 2013 that I found on the Mayo Clinic News Network- http://mayocl.in/2sEpI3M

I’ve also attached some information found on the Mayo Clinic website on Laser surgery for focal epilepsy http://mayocl.in/2tdzlDN

@bellap, can you explain VNS?

REPLY

The VNS is a type of small pacemaker that is put into the chest on the left side. It has wires that wrap around the vagus nerve that sends signals to the brain preventing seizures. There is no pain at all. While it is working during a seizure, your voice seems to lower in pitch.

REPLY

HI Everyone, I have had seizures since I was 7. I am now 38. I have been seizure-free for the last 7 years. but my memory is horrible with the 3 meds that I am on. I am on keppra xr 750, topmax 200, & tegretol 400. I have been on lots of meds & have had a number of cat scans, mri’s & eeg’s but they can never pin point what is causing the petite seizures that last about 30 seconds. can someone help me with some advice. I want to go back to school really bad..but because my memory is so bad that when I went back 2000 I ended up dropping out because I could not handle it…..I want to go back now…..Please any advice would help. thanks

REPLY

Hello @brjudevo79,

Welcome to Connect. Your desire to go back to school, and continue your education is truly admirable!

I’d like to introduce you to @ahernandez @lovingtruth83 @dawn_giacabazi @bonnieh218 @robertjr @williamdj @carnation @juliehart4 @kevinkelley, a few Connect members who have discussed absence seizures or petit mal seizures, and medication, and I’m confident they will return with their insights.

Here are some discussion you may wish to view, and perhaps share your story as well:
– Have you encountered brain difficulties because of epilepsy/seizures? https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/
– Living with epilepsy – Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/
– Epilepsy/seizure related https://connect.mayoclinic.org/discussion/epilepsyseizure-related/

I would also encourage you to take a look at this conversation, “New to Epilepsy!!” https://connect.mayoclinic.org/discussion/new-to-epilepsy/, where @debburrington @FaceNu have shared their concerns about Topamax (Topiramate).

@brjudevo79, do you use memory aids or brain training exercises to help with memory difficulties?

REPLY

Hello @brjudevo79, I am so very sorry for situation. I am afraid I cannot offer a solution. I can share with you my situation and experience. I started having seizures when I was six my story is a long one so I will spare you the details. too have been on so many medications I have lost count and at one time I was on Keppra and have been on Topamax and several other mediations at the same time. I was seizure free for a long time until I hit menopause. I began having petite mal seizures at the age of 48 and I am still having them now 10 years later. I have the once a month for just a week or so during the month. I have anywhere between 50-100 a day and they last about a second or two. My tests all come back normal because I cannot go in for the tests when I am actually having the seizures. I never know when they are coming. At one point I had them so often I could not even remember my telephone number. It was awful so I know the frustration you are feeling. I was taken off of the Topamax, my doctor tried a different medication because he felt the Topamax was not working. I realized after my doctor took me off how many side effects I had from it. It is hard to say if my memory issues were a side effect from the Topamax or if it was a result of the amount of seizures I was/am having. The seizures did not stop on my new medication either. I do not have any problems with my memory now except for the period of time I am having the seizures. During the week of the seizures my memory is terrible. When I am not having them my memory is fine. One thing that did happen, I was really good at math and use it in my job. I cannot do any math without writing it down or using a calculator. I can’t add anything in my head anymore. I left college because of my seizures so I can understand how you feel. Look into the side effects of your medication and if you have not, talk to your doctor about your feelings and side effects. Sometimes it’s really hard but there might be a solution. Don’t give up your dream of going to college.

REPLY
@brjudevo79

HI Everyone, I have had seizures since I was 7. I am now 38. I have been seizure-free for the last 7 years. but my memory is horrible with the 3 meds that I am on. I am on keppra xr 750, topmax 200, & tegretol 400. I have been on lots of meds & have had a number of cat scans, mri’s & eeg’s but they can never pin point what is causing the petite seizures that last about 30 seconds. can someone help me with some advice. I want to go back to school really bad..but because my memory is so bad that when I went back 2000 I ended up dropping out because I could not handle it…..I want to go back now…..Please any advice would help. thanks

Jump to this post

brjudevo79,ive had grand mals since iwas 5.asive gotten older memory gets worse.im now 63.when i was younger memory not bad as i started getting older notice difference.Dont know of any realways to help memory that much.forme a lot of fallsand hitting head and over30 years of dilantin catching up with me.mater of fact ,just takenoff dilantin ,thirdtime level went toxic this year.now on keppra.

REPLY
@kanaazpereira

Hello @brjudevo79,

Welcome to Connect. Your desire to go back to school, and continue your education is truly admirable!

I’d like to introduce you to @ahernandez @lovingtruth83 @dawn_giacabazi @bonnieh218 @robertjr @williamdj @carnation @juliehart4 @kevinkelley, a few Connect members who have discussed absence seizures or petit mal seizures, and medication, and I’m confident they will return with their insights.

Here are some discussion you may wish to view, and perhaps share your story as well:
– Have you encountered brain difficulties because of epilepsy/seizures? https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/
– Living with epilepsy – Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/
– Epilepsy/seizure related https://connect.mayoclinic.org/discussion/epilepsyseizure-related/

I would also encourage you to take a look at this conversation, “New to Epilepsy!!” https://connect.mayoclinic.org/discussion/new-to-epilepsy/, where @debburrington @FaceNu have shared their concerns about Topamax (Topiramate).

@brjudevo79, do you use memory aids or brain training exercises to help with memory difficulties?

Jump to this post

what kind of memory aids are there or brain training exercises are there?

REPLY
@kanaazpereira

Hello @brjudevo79,

Welcome to Connect. Your desire to go back to school, and continue your education is truly admirable!

I’d like to introduce you to @ahernandez @lovingtruth83 @dawn_giacabazi @bonnieh218 @robertjr @williamdj @carnation @juliehart4 @kevinkelley, a few Connect members who have discussed absence seizures or petit mal seizures, and medication, and I’m confident they will return with their insights.

Here are some discussion you may wish to view, and perhaps share your story as well:
– Have you encountered brain difficulties because of epilepsy/seizures? https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/
– Living with epilepsy – Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/
– Epilepsy/seizure related https://connect.mayoclinic.org/discussion/epilepsyseizure-related/

I would also encourage you to take a look at this conversation, “New to Epilepsy!!” https://connect.mayoclinic.org/discussion/new-to-epilepsy/, where @debburrington @FaceNu have shared their concerns about Topamax (Topiramate).

@brjudevo79, do you use memory aids or brain training exercises to help with memory difficulties?

Jump to this post

@brjudevo79 I found a list of helpful (and easy) things you can do here:
– Memory aids, reminders and brain training http://www.epilepsysociety.org.uk/memory-aids-reminders-and-brain-training#.VjOSirfntD8

What memory situation do you encounter most often and what trick do you use?

REPLY
@brjudevo79

HI Everyone, I have had seizures since I was 7. I am now 38. I have been seizure-free for the last 7 years. but my memory is horrible with the 3 meds that I am on. I am on keppra xr 750, topmax 200, & tegretol 400. I have been on lots of meds & have had a number of cat scans, mri’s & eeg’s but they can never pin point what is causing the petite seizures that last about 30 seconds. can someone help me with some advice. I want to go back to school really bad..but because my memory is so bad that when I went back 2000 I ended up dropping out because I could not handle it…..I want to go back now…..Please any advice would help. thanks

Jump to this post

I was on dilantin like 10 years ago. but they took me off of it. & put me on the combination that I am on now. Do any of the surgeries that are out there work?

REPLY
@brjudevo79

HI Everyone, I have had seizures since I was 7. I am now 38. I have been seizure-free for the last 7 years. but my memory is horrible with the 3 meds that I am on. I am on keppra xr 750, topmax 200, & tegretol 400. I have been on lots of meds & have had a number of cat scans, mri’s & eeg’s but they can never pin point what is causing the petite seizures that last about 30 seconds. can someone help me with some advice. I want to go back to school really bad..but because my memory is so bad that when I went back 2000 I ended up dropping out because I could not handle it…..I want to go back now…..Please any advice would help. thanks

Jump to this post

I had right temporal lobe surgery in 1983 at Mayo in Rochester, it works! Since then I’ve had no grand mal seizures. I was still having a few petit mal seizures. After a few years of trial and error, I was given Keppra for petit mal seizures which makes me totally seizure free since.
Hopefully this helps you with any decision making.

REPLY

Yes, surgery often is successful in stopping seizures or at least decreasing frequency or severity.
I have friends/acquaintances in England and two had Temporal Lobe surgery and their seizures stopped. One died about seven years after and is suspected to be a victim of SUDEP (Sudden Unexpected Death

REPLY
Please login or register to post a reply.