Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Temporal lobe surgery
Tue, 07/28/2009 - 03:05Hello 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 gnelson on Tue, 2010-04-13 - 14:01
Hi Anne-Marie,
As soon as I read your message and discovered your age, I wanted to contact you regarding my surgery. I'm scheduled to have surgery on my left temporal lobe in June 2010. I've had seizures since I was about 8 years old. I didn't have the epilepsy diagnosed until I was 21. My mother finally saw me have a seizure. My neurologist began to control the seizures with medication and continued with different meds until I was 35. At that time he suggested surgery. I was totally against it but as you stated in your message I wish I had accepted his suggestion.
I am now 50 years old. My seizures have continued, I've tried over 10 different meds, my memory is terrible, I have problems with speaking, problems with sleep, etc. I am very nervous but I feel things will worsen unless I have the surgery. I'm going to have it done at United Hospital in St. Paul, MN. I live in a state with great medical facilities but I am nervous that I haven't chosen the correct one. Everyone thinks that I'm worrying about too many things but they're not going to have this surgery!!
I would really like to hear about your life after the surgery. When will I be able to go back to work, the amount of time it will take me to somewhat recover, as well as many other things. I have heard about the pain afterwards but I'm not really worried about it unless I will experience it the rest of my life!
Please help
Thank you,
Gail
Hi Anne-Marie,
As soon as I read your message and discovered your age, I wanted to contact you regarding my surgery. I'm scheduled to have surgery on my left temporal lobe in June 2010. I've had seizures since I was about 8 years old. I didn't have the epilepsy diagnosed until I was 21. My mother finally saw me have a seizure. My neurologist began to control the seizures with medication and continued with different meds until I was 35. At that time he suggested surgery. I was totally against it but as you stated in your message I wish I had accepted his suggestion.
I am now 50 years old. My seizures have continued, I've tried over 10 different meds, my memory is terrible, I have problems with speaking, problems with sleep, etc. I am very nervous but I feel things will worsen unless I have the surgery. I'm going to have it done at United Hospital in St. Paul, MN. I live in a state with great medical facilities but I am nervous that I haven't chosen the correct one. Everyone thinks that I'm worrying about too many things but they're not going to have this surgery!!
I would really like to hear about your life after the surgery. When will I be able to go back to work, the amount of time it will take me to somewhat recover, as well as many other things. I have heard about the pain afterwards but I'm not really worried about it unless I will experience it the rest of my life!
Please help
Thank you,
Gail
Re: Temporal lobe surgery
Submitted by dawnwinks on Tue, 2010-04-13 - 17:01
Gail,
My thoughts are with you I had a right temporal lobectomy when I was 20, now I'm 42. I also live in Minnesota but had my surgery at Mayo, but most of my work up was at the U of M, but I was only 13 at the time and wasn't ready. Wish I'd done it sooner. Good Luck my thoughts are with you. If you want to talk more e mail dawnwinks@aol.com.
Dawn
Gail,
My thoughts are with you I had a right temporal lobectomy when I was 20, now I'm 42. I also live in Minnesota but had my surgery at Mayo, but most of my work up was at the U of M, but I was only 13 at the time and wasn't ready. Wish I'd done it sooner. Good Luck my thoughts are with you. If you want to talk more e mail dawnwinks@aol.com.
Dawn
Re: Temporal lobe surgery
Submitted by typhon on Mon, 2009-09-28 - 18:47
Anne-Marie
I can only tell you part of my story, your docs of course are the ones with which you make the decision.
I am 50 and wish I had not waited for the removal of a scar on my right temporal lobe.
While not without pain that tapers off, the decision was the right one. It’s been almost 6 months.
Memory, site, movement all good.
God Bless
Anne-Marie
I can only tell you part of my story, your docs of course are the ones with which you make the decision.
I am 50 and wish I had not waited for the removal of a scar on my right temporal lobe.
While not without pain that tapers off, the decision was the right one. It’s been almost 6 months.
Memory, site, movement all good.
God Bless