Hi there!

Has anyone here had the brain surgery? If so, how did it go. I had mine exactly 2 3/4 years ago and have been seizure free since then.

Jeff

Congratulations on your surgery. My name is Sherise. I'm 20 and I've been having petit mal seizures for about 7 years. I just recently started having grand mal seizures approx. a month ago. I've been taking Tegretol (my dosage was increased when the seizures progressed to grand mal), but my neurologist told me that it's possible that I might be taking this medication for the rest of my life. I don't really mind the medication, but the last seizure that I had scared my mother to death since she was sitting right next to me when I had it. I was just wondering what stage (or state) of epilepsy a person would have to be in before surgery starts to be considered as another option (besides medication).

To decide as to whether you could have surgery, depends on a few things... 1. What type of seizures are you having? 2. How many and how bad they are. 3. The cause for the seizures. 4. Where in the brain are they taking place. 5. What impact is the seizure having on your life.

Originally posted by sherise123:
Congratulations on your surgery. My name is Sherise. I'm 20 and I've been having petit mal seizures for about 7 years. I just recently started having grand mal seizures approx. a month ago. I've been taking Tegretol (my dosage was increased when the seizures progressed to grand mal), but my neurologist told me that it's possible that I might be taking this medication for the rest of my life. I don't really mind the medication, but the last seizure that I had scared my mother to death since she was sitting right next to me when I had it. I was just wondering what stage (or state) of epilepsy a person would have to be in before surgery starts to be considered as another option (besides medication).

Thanks for the info. I have another appointment with my neurologist coming up. He's already told me before that surgery is the last option he'd like to have to choose, though.

Once again, congratulations on your successful surgery.

Thank you very much! Keep my updated!

This is my first post here.
I chose the moniker "edileptic" because my name is Ed, my wife is epileptic, the "d" looks like an upside-down "p" which fits because her illness and consequent epilepsy have turned our lives upside down.

My wife had epilepsy surgery 5 years ago this month. It was a last resort because she was having "breakthrough" seizures the meds were failing to control. That was her 6th brain surgery. All went well after that until her pharmacy screwed up her medication -- right med, wrong dose. She started having t-c (tonic-clonic, previously known as gran mal) seizures. When we asked the neuro whether that meant the surgery was a failure, the doc said "Well, she's having fewer seizures than she was before so it was successful." Problem was, the seizures before were focal not t-c.

That's a pretty long post for a first one so I'll stop now.

I'm really sorry to hear about your wife. I would think that if her meds weren't working, and now, the surgery has had this outcome, you might have to ask your doctor what's the next step. There are people out there who have seizures more than once a day, everyday (meds or not). Also, what type of lifestyle are does she have? I'm asking because my doctor gave me lecture after lecture about making sure I got enough sleep, not burying myself in work and classes, and not getting so stressed about the harder classes and problems that I may have been having at home.

If the surgery did not work, another possibility would be to get the Vagus Nerve Stimulator.

jeff

You and your wife are probably more experts on epilepsy than I am with all that you guys have been through (smile)...so I just have one question...what does the Vagus Nerve Stimulator do exactly??

The Vagus Nerve Stimulator send small bolts of electricity to the brain to stop the seizures from happening

Well, the stimulator sounds like it might have to be the next step. How do you and your wife feel about your her having to use it?

It is not MY wife. I just know about it since I had epilepsy till 2 years ago and had surgery for it

I'm sorry njgabbai, I was responding to edileptics response. I thought it was his wife who had the surgery.

It is ok. No problem

Hi, jeanne.

I had the surgery almost 3 years ago. It was successful and the recovery was uneventful. I just stayed home for 2 months. No real pain or problems

My 18 y.o. daughter has temporal lobe epilepsy. They have just offered her the surgery option. She's been on 6 different medications since she was 13, none have controlled the seizure activity. She has only had 4 grand-mals (these just in the past year) but the smaller seizures have a real impact on her quality of life.

I know the surgery is a scary thought, it certainly is for me as her mother. Any information you can supply from a personal level would be greatly appreciated.

She doesn't like to talk about right now. The subject upsets her greatly.

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I was in the same situation. I had a total of 4-5 grand mal seizures my whole life and the rest were small ones which affected my life because I could not drive or get a good job or get married.

I had the surgery in Feb. of 1998 and I was scared at first, but I came out with flying colors and have been seizure free for almost 3 years now.

Jeff

You sound so positive about the outcome of your surgery. Was it a difficult decision for you to make to have the surgery?

I don't know how to get my daugher to talk about it. The doctor is waiting for her to make a decision. She only needs to go throught the Phase I testing, since they were able to pinpoint the exact location where her seizures originate.

How difficult was the Phase I testing for you? I think the test where they put 1/2 of your brain to sleep has her the most nervous.

I am very positive. If I had not had the surgery, I prob. still would not be driving and who knows whether I would be married now.

When the dr. first brought up about having surgery, I jumped out and said YES!!!!

It also helped because I went to a surgery support group in NY.

If she wants, I would be more than glad to talk with her.

I agree... The WADA test, the test you are talking about, was the only test that I did not like. They stuck me 3-5 times before they found the vein and then when the test was done, I had to lie still for 5-6 hours. However, the other tests were no problem and no pain.