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.

Surgery Process

Tue, 06/25/2013 - 20:09

Hello,

this is my first post so I will try to keep it short. A little background, Ive had seizures for over 20 yrs. I have been on at least 10 different meds in different combos and its never been controlled. They are nocturnal so I was able to deal with it. I got pregnant and my hormones went crazy. I had seizures all the time. I had close to a thousand and was told by the dr that it would get better once I had the baby. She also said she had never seen this happen during a pregnancy and she is a top dr in the state. She is amazing and I trust her 100%. Now I am trying to get surgery to get more control or rid of them. All the EEGs and MRIs I have ever had come back normal. I had the video one last yr and the drs said they are almost positive they are simple partial seizure in the left temporal lobe. I was offered surgery 10 yrs ago but was too scared. Now tho, everyday is a struggle for me and my husband is having trouble because I have always been the "strong" one in the relationship, and now I am all out of hope. I have lost all faith that I will get better unless I get surgery. I am afraid to drive and I want the best for my child and I need to be healthy and under control for her. Can anyone that has gone thru the surgery process tell me about what their experience was like. I already know I have to get the surgical EEG because the seizures don't show up on the other tests. My dr said it usually takes 9 months to go thru the whole process to make sure the patient is mentally ready for the surgery but I feel like I am ready. If they offered it tomorrow I would take it. I have never been so emotional in my life and I just cry every day becuz I cannot do anything and am so scared for the future. I meet with a dr soon and I am praying there is a way to speed up the process. Can anyone just give me an idea of what they went thru and how long everything took please? Thank you

Comments

Re: Surgery Process

Submitted by kwoodrow on Fri, 2013-06-28 - 10:53
I am considering surgery for my seizures. I am 49 and have had seizures for 30 years. I have always been terrified of surgery but have realized that my options in medication have been all used up. I was wondering if you could tell me what to expect when i have my surgery. I realize there will be pain involved but am completely unsure of what else i can expect. Recovery time, memory loss, speech, therapy, frustrations for myself and my family, mood swings. All of the things that are yet to come. I can tell you how much better this would make me feel to find this out.

Re: Surgery Process

Submitted by LJF on Fri, 2013-06-28 - 12:34
Have you already been told by a neurologist that you are def a candidate? That's what I am waiting for but I'm afraid to go thru the pre-operative tests and find out later on that I can't get the surgery. If you hear anything can you pass on the info to me please? I am also wondering how many tests you have to go thru until you are told that you can def get the surgery

Re: Surgery Process

Submitted by Law4977 on Sun, 2013-08-11 - 01:15

Hi LJF. Before you jump into surgery do a pros & cons list it will help your decision.  I had to go though 9 months of testing.  I had my surgery 10 years ago & for me it was not successful at all.

I went 13 months seizure free & was the best year of my life. (I've had seizures for 26 years). Then I had my first one after surgery & that was devistating. Now I have them the same amount I use to have. 

If I had to do it all over I would have never of had that surgery. I don't fall anymore, but I do have them just as many as I did before surgery. Think of the severity of your seizures. Can you live with them or find a way to deal with them? Think that way. On top of the seizures returning I also developed short term memory loss & have concentration problems. 

I don't mean to be a downer but really do the pros & cons to see if you could handle the outcome if it isn't successful.

 I wish you the best of luck!

Hi LJF. Before you jump into surgery do a pros & cons list it will help your decision.  I had to go though 9 months of testing.  I had my surgery 10 years ago & for me it was not successful at all.

I went 13 months seizure free & was the best year of my life. (I've had seizures for 26 years). Then I had my first one after surgery & that was devistating. Now I have them the same amount I use to have. 

If I had to do it all over I would have never of had that surgery. I don't fall anymore, but I do have them just as many as I did before surgery. Think of the severity of your seizures. Can you live with them or find a way to deal with them? Think that way. On top of the seizures returning I also developed short term memory loss & have concentration problems. 

I don't mean to be a downer but really do the pros & cons to see if you could handle the outcome if it isn't successful.

 I wish you the best of luck!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.