Newbie Here!

[ashmstng]

Hi my name is Ashley. I have had epilepsy for 23 years. I take 4 differents meds now. And have the VNS implanted. I will be having the brain surgery next month. I wanted to talk to someone that has had the brain surgery. Send me a message.

[RobinN]

Hi Ashley - Welcome to CWE
I considered having my daughters brain mapped to see if she was a candidate for surgery, but decided to try neurofeedback first. We have had incredible results from this, so I doubt I am going to talk to the doctor about the mapping.

Was the VNS not successful?

My friend Zoe had surgery, but I am not sure if she is able to be online much lately.

[ashmstng]

Hey Robin!
How are you? At first I thought the VNS wasnt doing anything but when I had to go in to get tests done and they shut it off. I had more seizures. So it is a help some. It doesnt exactly control it by itself. As you may know it comes with a magnet and the magnet you run across it stops it. But I have had less. Just still having them and not being able control them or figure what is causing them. So no the VNS was not successful. It may work differently on others. But it didnt work for me. Thanks for asking. Goodluck with your daughter.

[Birdbomb]

Welcome Ashley

Long time no see! We've missed you on the VNS Message Board!

Elisa had brain surgery and I know several others have, Getting old, can't remember names anymore!

[Bernard]

Hi Ashley, welcome to the forum.

There are several members here that have had brain surgeries. You might try sending Nancy a private message.

[speber]

Make yourself at home!

Peace
Speber

[ashmstng]

Hi Birdbomb, Bernard, & Speber!
Thanks for the welcome. I just found out my surgery date. May 22nd.

[Birdbomb]

[brain]

Ashley

Welcome to CWE! Glad to have you here!
And Umm - I see you left "Bird Food" for
the Birdy already?



GOOD LUCK with your upcoming surgery!

[ashmstng]

Hey Brain.
Thanks! I need all the luck I can get..

[BuckeyeFan]

First, welcome to CWE and a whole new world of support for you.

Second, yes we have several members who have had surgery. I know Mr Pibbs is also looking into surgery. I hope you are able to help each other.

I put your surgery date on my calendar so that I can say an extra prayer for you. Sure hope that it all goes well.

[skillefer]

Hi Ashley! Welcome to CWE. Sounds like you already know a couple of folks here. I don't have any experience with the VNS or surgery, but I know there are several people on here who do. So, feel free to ask questions. And like Buckeye, I'll be saying a prayer for you.

[ashmstng]

Hello BuckeyeFan, & Skillefer!
Thank you so much for the welcome and the prayers. If anyone has a question on the VNS I know about it. I had it since 2002. I have met a few people on here that are from the VNS board. Thanks again and I will go chat with MR. Pibbs and we will find out how it will turn out together. I will keep you all updated.

[paradise survivor]

Just want to wish you luck on the surgury! I too will offer up a prayer (can't have too many) Aloha

[ashmstng]

Thank You so much Paradise Survivor. I need as much as I can get. You are right, you cant have too many prayers. I hope you the best in what you do. I appreciate it so much from all of you. Thanks again!

[Elaine Howell]

Hi There, and welcome to this wonderful website. I had brain surgery in Sept 2000, I had a Cavernoma removed from my right temporal lobe. I was seizure free for five wonderful years, I didn't even have an aura. Please don't be put off by the fact that my seizures returned after five years, we are all so different, nobody has been able to tell me why they came back after such a long time, but I am waiting to have further surgery, as I have Sclerosis of my right Hippocampus. Any sort of surgery will leave scar tissue, especially on the brain, and I know that being a forceps delivery cause me to have epilepsy in the first place, I guess my first lot of surgery caused some scar tissue, but I am just grateful that I can have further surgey, even to get another five years seizure free would be brilliant.
what sort of surgery are you having? what part of the brain are they operating on? tell me all about it, I'm studying epilepsy care and management so I have a genuine interest in it too, I just wanted to learn as much as I could about my epilepsy, and how best to deal with it, also tell me how long you've been on the waiting list for surgery, and what sort of tests you had to undergoe, also, do you know what caused your epilepsy to start?

I hope to hear back from yu soon, I would love to hear from you.

Cheers

ELaine x