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LJF

Surgery Process

Topic: 

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

First of all LJF, I am the Mom of a son who has had epilepsy since he was 6.  He's 33 now.  He has been on almost every medication and has had a VNS and two brain surgeries.  It was only after the first surgery that we knew "where" these seizures were originating.   Totally enlightening for all of us.  We went to NYC for the second surgery after researching and was totally confident in the team there.   Had the best surgeon around and we still are dealing with seizures.  Bummed about it, yes, but I know they have tried their best to help.  He takes 3 different meds and two of them are the strongest ones out there.  The seizures are manageable and our son lives on his own and gets around quite well without a car.  Someday soon, medical science will catch up.

My advice is to go for it.  It may be something so simple to fix and your life could change forever.  Otherwise, you will always be wondering.   As long as you are in an area where these are routine surgeries and the doctors and been doing them for a long time, I would have total confidence in my decision.   

Good luck and pray everything goes well for you.  My last advice is this...do exactly what the doctors say when it comes to rehabing after the surgery.  Let everyone take care of you.  The whole idea is to not have a seizure after the surgery - trying to get back up and doing everything really is not a good idea.  The brain really does need time to heal.  :-)

 

 

 

Re: Surgery Process

Hi. You said your son has had seizures since he was 6, I was wondering at what age did he get the surgeries? My drs think I am a great candidate for surgery and I am getting it September 26th. It feels so far away tho. Did your sons drs seem positive that they were going to control the seizures before his surgeries. My dr says he is 90% sure he knows where my seizures are coming from but I have to get the surgical surgery to get the exact location and then they will remove it all in one hospital stay. I am very sorry about your son. What is a VSN? I have never heard of that and where are his seizures located and what kind of seizures does your son have?  

Re: Surgery Process

I have had epilepsy since I was about 5 years old.  However it wasn't diagnosed until I was 21.  I have been on numerous medications as well, about 10-15 and different combinations.  My seizures were originally simple partial seizures in the left temporal lobe but they did get worse as I aged and the seizures kept coming. 

Surgery was offered to me when I was 40 but I was of course scared and didn't have it done.  I now realize our bodies are affected in so many ways the longer you are on meds.  Every med has a different side effect.  I now have osteoporosis because of some of the meds.

I am now 54 and had surgery in 2010.  I am very glad I did it.   Since I waited so long I still have to take one med but it's a lot less than before the surgery.  The only change that occurred is problems coming up with a word.  I had speech therapy after the surgery and it helped.  It also sounds like you are younger so maybe you would be able to completely come off meds.

One more thing.   Melissa's advice is very important.  The physician had suggested to take 6 months off.  I  went back to work in 6 weeks.  I do think it would have been better for me to avoid stress.  I have had three seizures since surgery.  Hot weather caused one of them but the other two were caused by stress.  Follow your physicians directions.  It is more important than a patient may realize!

Good luck!!

Re: Surgery Process

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

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

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!

Re: Surgery Process

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

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

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!!!

Re: Surgery Process

LJF,

I had right-side surgery in 2003, details as follows:

http://users.eastlink.ca/~kehoe/surgery/

Kevin

 

 

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