Dr suggesting an RNS

[seizuregirl]

My Dr thinks that an RNS(Responsive neurostimulation) might work for me. Has anyone had one, or know of anyone who has?

I'm just wondering, I've looked at epilepsy.com's info on it, and it seems to be a bit complicated, especially since I don't have aura's, and I'm never aware of even having had one unless there's a mess, or a family member's witnessed it.

I'm also around toddler's mon-fri while their parent's are working, and my autistic twin who i'm not sure if she would be able to understand how to use the magnet correctly if she saw me having a seizure. I have an older nephew dropped off after school, but he's 11 yrs old. I can't really rely on him. I'm sure he'll understand what to do, but to get him to do it would be impossible.

It sounded like a good idea to me when my dr talked to us about it. But then he had talked about my having aura's when explaining how to use it, and I had to interrupt him to remind him that I didn't have aura's. But he still pushed it.

 

[Cint]

I don't have the RNS, but the VNS. I do have auras, therefore I am able to stop my seizures. There have been some folks here on CWE who had the RNS surgery with success: (note that these postings were when the RNS was in the Trial stage)

http://www.coping-with-epilepsy.com/forums/f38/neuro-pace-guinea-pig-1286/index4.html

 

[seizuregirl]

I know that I won't be scared of having anything connected too, or on, my brain. Whether it's the wires or anything metal to secure the RNS to my brain or scalp to stop it from moving, but if I did get scared, my Twin, and family, but mostly my Twin, would laugh at me and taunt me for the rest of my life!

Now yes, I had some brain removed already, but my Twin has had 6 shunts clamped to her brain for 28 years, and has had surgery 13 times to replace the shunts when they've broken down. So if I agree to have this done, I have inspiration right next to me to be brave for the surgery!

 

[valeriedl]

It sounded like a good idea to me when my dr talked to us about it. But then he had talked about my having aura's when explaining how to use it, and I had to interrupt him to remind him that I didn't have aura's. But he still pushed it.

I have a VNS and there are several times that I don't have an aura, just go right into the seizure, so I don't know to use the magnet. If I'm having the seizure and someone is with me to see it happening then they can use the magnet on me and it will bring me out of a seizure a lot quicker than before I got it.

There are times too if I'm having an aura and use the magnet I still my have a seizure though.

 

[seizuregirl]

If I have the RNS put in, I know it won't be a cure-all. I will keep having seizure's which is why I may end up saying No to having it put in. Even if it might slow them down, to where I don't have as many seizure's as I usually do, I just don't see it helping me in any way. Because of my short term memory loss I still won't be able to work, drive, or be as "normal" as we can be in my family. I'm used to my life as it is now. I don't see it changing much if it's put in.

It's not that I don't want to change my life, I'd be the HAPPIEST woman alive if I could drive, get off of disability, get a job and move out of my father's house! I'd be able to do what I wanted, when I wanted without having to find a family member who had the time to drive me to where I wanted. And it would put an end to my daycare that I run for my sister's, which I would be jumping, and dancing for joy! (Even though I can't dance!)

I could handle my own money, and open my own checking account again so I wouldn't have to ask my father if he had enough money in his checking acct to cover what I wanted to buy since he won't let me log on to the banks website to look at the account statements.

 

[Nakamova]

Then link below will take you to CWE threads about the RNS. Hope they are of use!
http://www.coping-with-epilepsy.com/forums/tags/rns.html