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Temporal lobe surgery

Tue, 07/28/2009 - 03:05

Hello to everyone who lives with and loves a person with uncontrolled epilepsy.

My beautiful 9 year old daughter is due to have surgery on the 29th of Sept 2009. Whilst we are excitied about the prospect of, 70% chance of becoming seizure free - we are concerned about the issue of stroke associated with the surgery. 

Has anyone experienced negative effects of the surgery? 

Concerned mother. Regards, Anne-Marie  

 

 

Comments

Re: Temporal lobe surgery

Submitted by Odd1Out on Sun, 2011-08-21 - 14:39

I know how hard seizures can be so I wanted to reply to this.Stay strong and keep going!

  My seizures began when I was 12yrs. I was a candidate for brain surgery because my Neurologist had tried almost every anti-convulsant out at the time.They only gave me very bad side-effects because I am allergic to most anti-convulsants.The dr. that performed my surgery didn't want to go through with it the first one because of the lack of information that they had. Thank God that he didn't! That was when I was 16yrs and in 1997. I was very disappointed though. Growing up with epilepsy makes you have to watch many around you have chances that you don't have. It can be really hard on a teen!My father at the time was in community theatre (non-paid) My parents took me with them because I could not be left home alone. The only time that I looked forward to were the weekends at the theatre. Kids were so mean to me in school. The arts got me through it all. 

     My seizures just got worse after that. I had up to 100 seizures a day at my worst. I was on Diastat, had to wear something due to the lack of blatter control and was given anal injections to stop my seizures because some of them lasted up to 45minutes. Not all of them lasted that long though. One medication that I took made me have a seizure almost all day long. I had some TERRIBLE side-effects to medications!That type of trauma I would not wish upon my worst enemy!The arts did help and I tried out for small chorus roles because I would not let anything stop me. I couldn't dance though so the directors would have to take note of that each time. I was often given a role in the chorus and had to leave due to my health. I never could read lines well at that time so I never tried out for the leads. I had a seizure on-stage once. Someone picked me up and took me back-stage to finish it.

Painting was suggested to me after one of my mothers friends saw me have a seizure. I looked forward to learning about that so much. In 2003 my Neurologist suggested brain surgery again. Surprising many I went.

I woke up with my left side temporarily paralyzed, please note this was in 2003! I remember laying there looking at my hand, getting frustrated because it just wouldn't move. Loads of drs came to see me each day.I went through alot. I was sent to a rehab. center and I remember everyone looking sad. Some of them had strokes, some of them without legs, etc. so I did what helped me be happy. I sang! There I was in a wheelchair and I sang to give others hope.

When we had painting therapy classes, I remembered that I wanted to learn to paint. Until then, painting was not on my mind at all. Just getting my body to move right. I was stubborn though and wanted to get out of that wheelchair. To be able to eat on my own, take showers, etc. without having to have someone else there to help me. It really opened my eyes to be grateful to those that are there. Nurses, etc. that are there to help others without their help where would we be?

I worked and worked and worked. I could eventually walk, talk, eat, etc. all on my own. Now you can't tell to look at me that I am any different then others. I don't even walk with a limp.  I still have seizures now and my concentration depends on other issues such as sleep, etc. but I'm alive. I now know the HUGE risk that brain surgery is and I wouldn't of taken that risk if I were not so close to death and had not tried every other option. At the time honestly it really wasn't up to me it was up to my parents because I could not think. I am blessed to be alive. Now that I can think at times, I would have brain surgery again if I were so bad off that I needed it. I am not however anymore due to surgery. I would highly suggest it to those that are asking for someone else in need. I would however also suggest that you find out from a clincal dr. if it surgery is needed and all of the risks, etc. Way those risks.

Please note that now although it is harder for me I have painted as therapy throughout the years and am going to try to go to college for visual arts. If I can find the financial support needed that is.

I can not drive due to seizures but the pain that I have gone through has made me stronger. I would do it all over again just to be able to share my story. If I can do it, you can. Don't give up.....:) Stay strong.....

*HUGS*

I know how hard seizures can be so I wanted to reply to this.Stay strong and keep going!

  My seizures began when I was 12yrs. I was a candidate for brain surgery because my Neurologist had tried almost every anti-convulsant out at the time.They only gave me very bad side-effects because I am allergic to most anti-convulsants.The dr. that performed my surgery didn't want to go through with it the first one because of the lack of information that they had. Thank God that he didn't! That was when I was 16yrs and in 1997. I was very disappointed though. Growing up with epilepsy makes you have to watch many around you have chances that you don't have. It can be really hard on a teen!My father at the time was in community theatre (non-paid) My parents took me with them because I could not be left home alone. The only time that I looked forward to were the weekends at the theatre. Kids were so mean to me in school. The arts got me through it all. 

     My seizures just got worse after that. I had up to 100 seizures a day at my worst. I was on Diastat, had to wear something due to the lack of blatter control and was given anal injections to stop my seizures because some of them lasted up to 45minutes. Not all of them lasted that long though. One medication that I took made me have a seizure almost all day long. I had some TERRIBLE side-effects to medications!That type of trauma I would not wish upon my worst enemy!The arts did help and I tried out for small chorus roles because I would not let anything stop me. I couldn't dance though so the directors would have to take note of that each time. I was often given a role in the chorus and had to leave due to my health. I never could read lines well at that time so I never tried out for the leads. I had a seizure on-stage once. Someone picked me up and took me back-stage to finish it.

Painting was suggested to me after one of my mothers friends saw me have a seizure. I looked forward to learning about that so much. In 2003 my Neurologist suggested brain surgery again. Surprising many I went.

I woke up with my left side temporarily paralyzed, please note this was in 2003! I remember laying there looking at my hand, getting frustrated because it just wouldn't move. Loads of drs came to see me each day.I went through alot. I was sent to a rehab. center and I remember everyone looking sad. Some of them had strokes, some of them without legs, etc. so I did what helped me be happy. I sang! There I was in a wheelchair and I sang to give others hope.

When we had painting therapy classes, I remembered that I wanted to learn to paint. Until then, painting was not on my mind at all. Just getting my body to move right. I was stubborn though and wanted to get out of that wheelchair. To be able to eat on my own, take showers, etc. without having to have someone else there to help me. It really opened my eyes to be grateful to those that are there. Nurses, etc. that are there to help others without their help where would we be?

I worked and worked and worked. I could eventually walk, talk, eat, etc. all on my own. Now you can't tell to look at me that I am any different then others. I don't even walk with a limp.  I still have seizures now and my concentration depends on other issues such as sleep, etc. but I'm alive. I now know the HUGE risk that brain surgery is and I wouldn't of taken that risk if I were not so close to death and had not tried every other option. At the time honestly it really wasn't up to me it was up to my parents because I could not think. I am blessed to be alive. Now that I can think at times, I would have brain surgery again if I were so bad off that I needed it. I am not however anymore due to surgery. I would highly suggest it to those that are asking for someone else in need. I would however also suggest that you find out from a clincal dr. if it surgery is needed and all of the risks, etc. Way those risks.

Please note that now although it is harder for me I have painted as therapy throughout the years and am going to try to go to college for visual arts. If I can find the financial support needed that is.

I can not drive due to seizures but the pain that I have gone through has made me stronger. I would do it all over again just to be able to share my story. If I can do it, you can. Don't give up.....:) Stay strong.....

*HUGS*

Re: Temporal lobe surgery

Submitted by leeanne on Sat, 2009-08-22 - 12:10
Hi Anne Marie, my 28 year old son had a left hippocampus surgery on May 20, 2009.  I know the stress you are enduring. Dan has been seizure free since surgery.  We were scared of strokes and every other complication that they warned us about, but Dan came through fantastic.  He had total recall immediately after awakening from surgery. He did experience extreme headaches after surgery and his head got very swollen. They didn't warn us of that and we were in complete panic mode. Afterward they said it was completely expected, so don't be surprised if it happens to your daughter. We had a wonderful surgeon and I thank God for his talented hands.  My prayers are with you on this journey.

Re: Temporal lobe surgery

Submitted by KSULLIVAN83 on Sat, 2009-08-22 - 20:23

Hi Anne-Marie,

My husband had two temporal lobe surgeries last Oct. First they inserted the EEG grids in the brain and left them in there for about a week to find out the exact location of the seizure focus. Then one week from the original surgery they went in for the resection.

He came out of the surgery wonderfully. He had severe headaches the day after the last surgery, but he went home the next day! Nine days total in the hospital! He has only had a breakthrough seizure once since ( due to forgetting meds!!!) since.

Before the surgery, he was having seizures monthly, and they were life threatining. He was not a good canidate for the surgery, but they were sure that he would die sooner or later if we didn't try. It was the best decision that we've made! We are so thankfull to the staff at Brigham and Womens hospital in Boston!!!

Good luck with your daughter! I will be thinking of you!

Hi Anne-Marie,

My husband had two temporal lobe surgeries last Oct. First they inserted the EEG grids in the brain and left them in there for about a week to find out the exact location of the seizure focus. Then one week from the original surgery they went in for the resection.

He came out of the surgery wonderfully. He had severe headaches the day after the last surgery, but he went home the next day! Nine days total in the hospital! He has only had a breakthrough seizure once since ( due to forgetting meds!!!) since.

Before the surgery, he was having seizures monthly, and they were life threatining. He was not a good canidate for the surgery, but they were sure that he would die sooner or later if we didn't try. It was the best decision that we've made! We are so thankfull to the staff at Brigham and Womens hospital in Boston!!!

Good luck with your daughter! I will be thinking of you!

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