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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 Melissa77014 on Wed, 2013-06-26 - 11:47

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.  :-)

 

 

 

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

Submitted by LJF on Sun, 2013-08-11 - 10:26
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

Submitted by gnelson on Wed, 2013-06-26 - 13:45

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!!

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!!

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