Hi guys, just dropping a new thread to say hi and to let you all know what's been going on with me since the last time I posted. I found out from neuro that I'm not able to have a fourth brain surgery(too risky) so no more surgeries but if my seizures start to get worse I'll have to look into getting the VNS. I've been doing good, I went apartment looking today and I think I actually found one . Though I am scared to death about living alone I'm really excited. Although I do have a few seizures every now and then I'm still going to try and find a job as a Massage Therapist. I do have one question , when it comes to a job, should I be open about my Epilepsy or should I just keep that to myself. I'm afraid I won't get hired if they find out that I have E. Just looking for some advice on that. I sure do hope all of you are doing well and enjoying your summer!!

This is hard time for me because this is the time that my neuro that I had for many years past away from a heartattack. This man was awsome, he gave me his pager number to reach him anytime because my seizures were that bad at that time. I miss him terribly and their will never be another neuro/epi like him. It's hard to find another one who treated you so well and understood your condition to a "T" so to speak. He was part of my family Just need to vent a little bit.

Tiger,

Nice to see you back. Do you know much about VNS?

Sorry to hear your Neuro past away. When a person finds a good doctor they are really lucky. When we lose them it really hurts. There are not many doctors a person feels close to. Prayers are with you.

Darlene

Hi Tiger Lilly,
It's great to hear from you again. I'm sorry that you aren't able to have the surgery. Have you thought about the ketogenic diet I've been using that and it has help stop the tc sz. that I had last yr. My advice to you is to start seeing an epi at an Epilepsy Center. I found they were way ahead of any neuro I saw and were more updated on the correct medical procedures for the types of sz. I have. Here's wishing you well and May God Bless You!

Sue

Thank you for your prayers Darlene I do know some info about the VNS but right now I'm just taking things day by day. After my third brain surgery I developed headaches. I have a headache every single day so I'm now seeing a headache specialist to help me with that. As for the VNS it's something that I might have to think about getting in the future. I've done some research on it but I haven't been able to talk to anyone who actually has one. I'd like to know about side affects, just what's it like, etc. Thanks again for your thoughts and prayers *Hug

It does suck that I won't be able to get rid of the last bit of my right temporal lobe which is were my seizures are coming from but, I'd rather be safe than sorry. Thanks for the info about the Epi and I'll be doing some research on that and I'll let you know how that goes. As for the diet I was told along time ago that the diet wouldn't help me at all. That was one of the reasons why I had my first brain surgery....there really wasn't any other route I could go at that time. I'll let you know how my research goes! Thanks Again

Hi Tiger Lilly,
I wish you the best of luck and I want you to know that my sz. are from the right temporal lobe also and just like you the surgeon felt it was to risky to remove all of the scar tissue on the rtl for fear of me going blind or being paralyzed. I'm checking into a new form of treatment they are calling RNS which is a device that sends stimulating singles to the brain before a sz. starts and it stops the sz. They are looking for people to go into different hospitals and give it a try and I might if I know my ins. co. will cover me. Here's wishing you well and May God Bless You!

Sue

Tiger,

Why I was asking about the VNS, is because I have one. I have had it for 4 years now. It took about a year to really start helping. A number of people don't think it helps where I see it has helped me. I am not controlled but the spells are farther apart and milder.

The only side-effect I ended up with is the hoarseness. Let me know if you would like to talk about this.

Darlene

Sue, It does suck that I couldn't have a fourth surgery but it's better to be safe than sorry. You let me know if your insurance co. will cover you and when or if your going to get the RNS done! *Hug*

Darlene, So far my seizures aren't bad like they used to be. The VNS is a possibility in the future if my seizures begin to get worse. I don't know if I'll even decide to do the VNS because I'm just sick of them poking around in my brain. I'm just gonna take a break for a bit.