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Right Temporal Lobe Brain Surgery to stop seizures.

Thu, 11/13/2008 - 15:10

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

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Submitted by Mama-Mia on Thu, 2008-11-13 - 16:11

 

Hi there,

 

I had surgery in the right temporal lobe three years ago.  By the time I got into have surgery I had five different types of seizures.  There were some complications with my surgery and I ended up in the hospital for three weeks.  I lost some of my vision and most of the feeling in my left hand. Althought, I am still glad that I did it!!! I am on half as many meds and my seizure are completely under control!! The complications that I had could have easily been avoided!!  My sugestion to you is that your daughter should go ahead with the surgery, however someone should be with her as often as posible, and if she starts to get really sleepy or is not acting normally, let the nurse know, and if he/she does nothing about it and you are still concerned, tell them you want to see a doctor RIGHT AWAY!!  My intention is not to scare you or your daughter from going through with the surgery, I simply want to let you know how to help amake sure that it is a good experience.  One that she will be happy she did for the rest of her life!!!

 I wish you both the best.

 

Hi there,

 

I had surgery in the right temporal lobe three years ago.  By the time I got into have surgery I had five different types of seizures.  There were some complications with my surgery and I ended up in the hospital for three weeks.  I lost some of my vision and most of the feeling in my left hand. Althought, I am still glad that I did it!!! I am on half as many meds and my seizure are completely under control!! The complications that I had could have easily been avoided!!  My sugestion to you is that your daughter should go ahead with the surgery, however someone should be with her as often as posible, and if she starts to get really sleepy or is not acting normally, let the nurse know, and if he/she does nothing about it and you are still concerned, tell them you want to see a doctor RIGHT AWAY!!  My intention is not to scare you or your daughter from going through with the surgery, I simply want to let you know how to help amake sure that it is a good experience.  One that she will be happy she did for the rest of her life!!!

 I wish you both the best.

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Submitted by aussie2006 on Fri, 2008-11-14 - 22:17

Hi , I had left temporal lobe surgery and partial left hippocampus removal in 2006, and to date have been seizure free. I tried every medication under the sun but nothing gave me complte control over my seizures, I was having on average 4-5 seizures a month with no improvement in changes to medications.At the time of surgery I was taking 14 anti epileptic tablets per day,and because I had been taking these medications for 44 years the withdrawal period is very slow but I hope to be completly off my medications by mid 2009.   During the phase of going through all the testing I had a test called an fMRI which at the time was very new, this test  is non invasive ( like a wada test is) but can give similar results,it is worth enquiring about this test if your daughter has not been through this stage yet.   My surgeon gave me a 70% chance of been cured(no doctor had used the word cured before) a 20% chance of the epilepsy been improved but not cured and a 10% chance of no change or worse off. So basically I had a 90% chance of been better off ( as far as seizures are concerned),than I was which were very good odds.  I went through all the worry about will I be the same will i be able to walk,talk,think,etc etc, which was why before I had surgery I had an enduring power of attorney drawn up in case I was unable to manage my affairs should something go wrong in surgery. However it must be an "enduring" power of attorney as a normal power of attorney becomes invalid once something happens to the subject persion.  Another good idea would be to get a field vision test done before surgery this is for your periphial vision and can then compare it with another test about 6-7 months after surgery as the eye muscles need time to repair themselves. I was advised not to attempt to change my prescription glasses for at least 7 months after surgery giving my eyes time to heal.   The brain has no feelings so you dont feel a lot of pain ,apart from a  good headache from been cut open. I was in hospital for 7 days after my surgery  and off work for a total of 7 weeks. I chose to have my surgery done at a private hospital, so much better in every way than our public hospitals here in Australia- better care, quieter, option of private room it all helps in the recovery time you are in hospital. You to can greatly assist her, simply by been there for her,before  going into hospital and supporting her decision,(despite your fears), if you can visit her daily while in hospital, and again when she goes home to help her out. If they use morphine in hospital to help manage the headaches(like I had), she may get teary very easily even for a few weeks once she is home ,it takes time to get out of your system. At the time  I felt that my surgery would not have been possible  if I had not recieved the support I got from my parents, but I was unable, at the time to understand that it was still the effects of the morphine wearing off.   My surgeon described the surgery as been simpler than having your appendix removed. I was fortunate in one way, I found out on the Thursday I was compitable for surgery and was booked for surgery on the following Tuesday, so I only had 5 days to worry once I knew I was compitable.  Originally,when  I was going through the tests to find out if I was suitable for surgery, I felt there was no way I was going to let anyone cut me open and play around with my brain-all that changed once I met my surgeon ,he answered every question honestly and re assuringly . Stay positive and bright  , if your daughter is a suitable candidate I would STRONGLY RECOMMEND she has the surgery it is a Life Altering procedure, she will be able to drive a car,after a qualifying period, go swimming without fear of having a turn just to name a couple of things people with epilepsy cant do. Good luck and I hope the surgery is sucessful.

                                                                   Aussie

Hi , I had left temporal lobe surgery and partial left hippocampus removal in 2006, and to date have been seizure free. I tried every medication under the sun but nothing gave me complte control over my seizures, I was having on average 4-5 seizures a month with no improvement in changes to medications.At the time of surgery I was taking 14 anti epileptic tablets per day,and because I had been taking these medications for 44 years the withdrawal period is very slow but I hope to be completly off my medications by mid 2009.   During the phase of going through all the testing I had a test called an fMRI which at the time was very new, this test  is non invasive ( like a wada test is) but can give similar results,it is worth enquiring about this test if your daughter has not been through this stage yet.   My surgeon gave me a 70% chance of been cured(no doctor had used the word cured before) a 20% chance of the epilepsy been improved but not cured and a 10% chance of no change or worse off. So basically I had a 90% chance of been better off ( as far as seizures are concerned),than I was which were very good odds.  I went through all the worry about will I be the same will i be able to walk,talk,think,etc etc, which was why before I had surgery I had an enduring power of attorney drawn up in case I was unable to manage my affairs should something go wrong in surgery. However it must be an "enduring" power of attorney as a normal power of attorney becomes invalid once something happens to the subject persion.  Another good idea would be to get a field vision test done before surgery this is for your periphial vision and can then compare it with another test about 6-7 months after surgery as the eye muscles need time to repair themselves. I was advised not to attempt to change my prescription glasses for at least 7 months after surgery giving my eyes time to heal.   The brain has no feelings so you dont feel a lot of pain ,apart from a  good headache from been cut open. I was in hospital for 7 days after my surgery  and off work for a total of 7 weeks. I chose to have my surgery done at a private hospital, so much better in every way than our public hospitals here in Australia- better care, quieter, option of private room it all helps in the recovery time you are in hospital. You to can greatly assist her, simply by been there for her,before  going into hospital and supporting her decision,(despite your fears), if you can visit her daily while in hospital, and again when she goes home to help her out. If they use morphine in hospital to help manage the headaches(like I had), she may get teary very easily even for a few weeks once she is home ,it takes time to get out of your system. At the time  I felt that my surgery would not have been possible  if I had not recieved the support I got from my parents, but I was unable, at the time to understand that it was still the effects of the morphine wearing off.   My surgeon described the surgery as been simpler than having your appendix removed. I was fortunate in one way, I found out on the Thursday I was compitable for surgery and was booked for surgery on the following Tuesday, so I only had 5 days to worry once I knew I was compitable.  Originally,when  I was going through the tests to find out if I was suitable for surgery, I felt there was no way I was going to let anyone cut me open and play around with my brain-all that changed once I met my surgeon ,he answered every question honestly and re assuringly . Stay positive and bright  , if your daughter is a suitable candidate I would STRONGLY RECOMMEND she has the surgery it is a Life Altering procedure, she will be able to drive a car,after a qualifying period, go swimming without fear of having a turn just to name a couple of things people with epilepsy cant do. Good luck and I hope the surgery is sucessful.

                                                                   Aussie

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Submitted by atu276 on Thu, 2008-11-13 - 17:19

Hello

     Well I had brain surgery 3 months ago it was a left temporal lobe and so far so good.  For me you have to stay positive, I have had seizures for 44 yrs and I don't regret one minute having my surgery. I was in the hospital for 4 day and my surgery took 6 hrs and as long has you have family and friends that are there for you and you have great doctors you are better off having the surgery then suffering any long. What do you think?  Best of Luck

Lynn

Hello

     Well I had brain surgery 3 months ago it was a left temporal lobe and so far so good.  For me you have to stay positive, I have had seizures for 44 yrs and I don't regret one minute having my surgery. I was in the hospital for 4 day and my surgery took 6 hrs and as long has you have family and friends that are there for you and you have great doctors you are better off having the surgery then suffering any long. What do you think?  Best of Luck

Lynn

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