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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 srchaser67 on Thu, 2013-06-27 - 09:55
Hi Just wanted to say "your making a step forward." That's the most important part and the support from every close person in your family is so important. I had surgery 14 months ago. Left side, and all that stuff. I will tell you about the steps it took for me to finally get passed to be able to have this surgery. If you want that story let me know. But I have to tell you if there are issues that effect the family, ask for their help. This would show how serious you are of bettering things no matter what it takes. I felt things even as bad as guilt because of how my (44 years) of epilepsy has effected others also. You will need their backup support on this. Don't carry it yourself through all the testing etc. another pair of ears will be a huge benefit. It will be too much to understand and remember by yourself. Tell them to take notes the whole time. And you will need mental support saying "its the correct thing to do." Stress is the worst for us as you know, and it will be that. But your also a strong willed person for taking the first step. Work as a team and its so beneficial for everyone. Especially for your self pride. Sonny

Re: Surgery Process

Submitted by LJF on Thu, 2013-06-27 - 21:17

Thank you for replying. I am very interested in your story. I am wondering what kind of seizures you have and how many tests you had to do. I am wondering if I can skip some tests because I already kno that I need to have the surgical EEG. The dr told me it is usually a nine month process and I just feel so exhausted. I was told all during my pregnancy that I should get better after I have the baby but turns out they were wrong. I do have a large family that is very supportive. My mom offered for me to live with her, my brother offered to move in with me, and my dad wants to pay for everything so I am very blessed. The only person I am worried about is my husband. He always concentrates on what could possibly go wrong and get overwhelmed very easily so I don't want him to have problems. Both my husband and mom go to my appointments with me so if I miss anything they will remember. I already don't have a good memory. I'm glad your surgery has helped you. I just really don't want to be disappointed and be told that I can't get the surgery. Please write me back when you get a chance. I am so mad at myself for not trying the surgery when I was in my teens becuz epilepsy has taken so many things that should be exciting and has made them so scary instead.

Thank you for replying. I am very interested in your story. I am wondering what kind of seizures you have and how many tests you had to do. I am wondering if I can skip some tests because I already kno that I need to have the surgical EEG. The dr told me it is usually a nine month process and I just feel so exhausted. I was told all during my pregnancy that I should get better after I have the baby but turns out they were wrong. I do have a large family that is very supportive. My mom offered for me to live with her, my brother offered to move in with me, and my dad wants to pay for everything so I am very blessed. The only person I am worried about is my husband. He always concentrates on what could possibly go wrong and get overwhelmed very easily so I don't want him to have problems. Both my husband and mom go to my appointments with me so if I miss anything they will remember. I already don't have a good memory. I'm glad your surgery has helped you. I just really don't want to be disappointed and be told that I can't get the surgery. Please write me back when you get a chance. I am so mad at myself for not trying the surgery when I was in my teens becuz epilepsy has taken so many things that should be exciting and has made them so scary instead.

Re: Surgery Process

Submitted by LJF on Thu, 2013-06-27 - 11:45
Thank you all for writing back. I am in my 20s so I think I am still young. I live near Philly and will be at Jefferson hospital and they are all amazing. I kno what you mean about side effects like osteoporosis. I was told I had the early stages of that when I was 16! The meds I was on were fairly new and they just knew it would make me loose weight but it also made me lose my memory. I lost 3 yrs of my life because of that med and I barely graduated highschool becuz I couldn't remember anything I was taught. Im so glad I found this sight because I don't feel so alone anymore. I have a large family and they are all super supportive. My dad is paying for everything and my mom offered for me to live there and my brother offered to move in with me. I'm mostly worried about my husband. He says he supports me but when if it actually happens he will not be able to handle it. He is a little dramatic and thought I was going die during my pregnancy, then when we had the baby he had horrible depression because it wasn't "fun". It was hell for me. I just want this nightmare to be over!!!

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