a friend of mine
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phoenix_sun posted:
I have a friend that has finally founf the cause of her szs. For years adb years and years they never fiounf anything with EEGs MRIs AND CTs. Then they were doing and EEG and abnoraml activity showed up so they had herhave a repeat MRI and founf scar tissue on her left temporal. But she kkeeps waiting for her parents and other relatives to make that descion for her her rather than her making that decion for herself.

I scared the liver out of her when I told her I had to get the battery prelaced in my VNS becuase the battery wore down and I had it replced on August 25th of last year, But she is acandaite for both. Her doc is waiting but she keeps witing in all her relaives to make that fianl decioudn.

I do not find that right. She is just making things worse for herself.

He boyfirend had to change his hrs to be with her durubng the day.

my neuro gave ne no choice he made me get the VNS even if I did not want it,

HE did not me messing around lie she is.

can any one give me some idead about her hanging around her family waiting for them to make the choice rather her making the cice,

I do not know what to tell her.

thanks

pheonx_sun
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pennsygardener responded:
Hi Phoenix_sun, Maybe she's seeking their approval and support, and possibly she doesn't think she's getting that right now. Or she could just be afraid to take the step/s.
I hope she does soon, and she's lucky to have a friend like you.
Maxine
 
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clarinet2 responded:
Phoenix,
My story is very similar to your friends. Doctors were perplexed why my tonic clonic seizures were controlled by medications, but the complex partial seizures continued. My seizures increased with age and I have taken FDA approved and experimental medications, but was not completely controlled. I knew that I could not rely on my family and friends to make the medical decisions for me because it was my body. For 20 years I have been evaluated to see if I was a candidate for brain surgery, but was turned down every time because the starting point of my seizures could not be located.

New technology for brain mapping grid observation started and in 2001 I had this done. The doctor's gave me the option that if surgery could not be done then the VNS would be installed. I made my decision and said let's do it! Making this decision was similar to a person checking themselves into a rehab center. I had to make the choice myself. By waiting longer I would have been asking myself for the rest of my life, should I go through this or back out. By not making the decision myself I would have been living my life wondering what would have happened if I decided not to go through surgery or the VNS.

With the most recent new laser surgery breakthrough your friend will have a much better opportunity with a much easier recovery!

Your friend needs to realize that she is in charge of her body and must make the medical decisions when she is ready. If she needs encouragement that is why she can contact others who are dealing with the same confusion and fear. Get your fiend involved with a support group or involved with a Web MD discussion.

Keep encouraging your friend to keep moving forward and socialize with others who are have gone through the same situation.

Dana
 
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saxofone1 responded:
Hi phoenix

I had brain surgery in '02. Clarinet2 was my mentor. The decision to have the surgry was totally mine. I had not discussed it with my family because I felt that my parents would have found every reason for me NOT to have it.

My first seizure was in '75. I had been on at least ten meds prior to my decision. Like C2, I would wonder what could have been had I not had the surgery. "WHAT IFS" can be frustrating.

Your friend needs to make a decision for herself that she feels comfortable with. She might be afraid of what might happen in regards to having a brain surgery. I didn't care. I was sick of the med changes and my seizures were getting worse.

Like C2, I was on a couple of drug studies.

From what has already been shared with you, I can suggest that you and your friend talk with someone who has had brain surgery. Is her doctor willing to set her up with a patient who has had the surgery she is considering? It might help ease some of her concerns/fears that might be delaying HER decision.

C2 was a great help to me. I was able to talk with her prior to my surgery. She gave me the insight that patients have.

Don't be afraid to ask questions that your friend might overlook/forget. Enter surgery into "search this community" and you'll find some good stories.

Try to get her to share her concerns with us. Family can be a hindrance but this decision is her's to make. Gather as much info for her as you can.

I am glad that I had the lobectomy. It cut out about 90% of my seizure activity. I'm taking half the daily meds that I was taking prior to the surgery.

Get a list of questions from your friend so that we might be able to shed some light on her uncertainy.

One more thing, C2 is now a very dear friend to me. We never know where support/friendship/love will come from. Thanks for being in your friend's corner.

angie
 
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thebstyet2com responded:
This is a person choice that she has to make for herself. Yes it may be effecting other people in her family, friends, etc., she is the last person that goes to bed dealing with this problem. I know this because I know that my mother loves me but I am still right now, an epileptic. I know that my wife and daughters love me tremendously but right now, I am still the epileptic. I do plan on one day being healed of this but it will be because the Lord will work through me and for me and that will not happen until I get to point until my faith is ready. I am waiting on me. And so is your friend, she is waiting on hersellf.