RNS Neurostimulator

Posted by dontlikerns @dontlikerns, Jun 1 2:58am

I’m 44 years old and have been suffering from “mild epileptic seizures” for about 30 years and I tried all drugs and finally stayed with lamictal. My seizures were an aura but I wouldn’t ever fall but slightly twitch. I have poor memory and hard to learn. I just didn’t know what I was doing or the normal people in my life during seizure and saying odd things. But I never fell or anything like now.
I got the RNS back in 2015 . My neurologist reminded me many time before that it’s not a cure and I would have to still take pills and will have episodes still. I completely fine with that!! It’s in the left side of the skull and I had so much excitement for it but I hate it. After the first week I started biting the inside of my left cheek, biting the left side of my tongue, grinding the left side of my face into the floor and my left eye was bruised. and I grinded my teeth and it separated for a while. I had so many scars bruises only on left side. I couldn’t speak properly and inside of mouth hurt. I told my dr and sent pix of my face and he started slowly increasing the strength but it happens continuously that I’m falling and grinding left side of my mouth. And I have started to urinate on myself. Sometimes I feel tingles on it. And my left hand and fingers would hurt and hard to move. And it has constantly continued. I will fall and hurt only left side of my mouth and body. And start twitching very bad.
This past Mother’s Day week I was at dentist and happened again and didn’t finish the cleaning. My husband was in the lobby. I had while in the car, and again urinated on bed. My husband said it was six seizures in 2 days. I don’t remember anything. My husband knows best what to do and uses the magnet when he can
It’s been at the highest strength for few years and it’s NOT any better.
I’ve informed my dr about all of this since it started. I’ve emailed him with date, time of the seizures. Even with dr from Neuropace center and they both act surprised like they haven’t heard this before. He’s able to show me all the seizures it’s captured and all that hasn’t.
I feel it’s not actually capturing. Its just pausing them then releasing it all at once. Because my seizures weren’t ever this bad before. I now start farting around people and saying things I shouldn’t. It’s made me feel more mad and upset.
Before I wasn’t working but still can’t I was hoping to get my drivers license back and work again.
Is anyone else going through this after RNS implant? Because the drs make it seem like I was the only one.
I’m finally want it removed. I would rather have the types of seizures from before.
I don’t wish this to anyone. But I can’t find the support of anyone that can relate. People don’t understand that they only have to deal with it. But us with epilepsy have to experience it AND deal with it.
Thank you for reading

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Hello dontlikerns!
Those are horrible things to experience. I would want to pull that RNS out of my body. The same way I feel about the VNS I have. I will eventually have this horrible implant removed and I can fully understand why you want yours removed. I would let the doctor know it has not been of any benefit and that you would like it to be removed.

@lsittll

REPLY

Hello @dontlikerns and welcome to Mayo Clinic Connect. I am sure it is frustrating to read only positive reviews on a device and find yourself experiencing it differently.

I noticed that you posted two similar posts on this topic so you will notice that I have removed the other version to allow members like @lsittll to connect with you here.

Are your doctors favorable to removing the device at your request? Have you ever considered seeking a second opinion at a teaching hospital where a team of doctors would focus on you?

REPLY

Thank you for replying
Yes this is my second opinion. I was actually referred there from my first neurologist that was from a completely different hospital. He said it’s one of the best neurology teams in California. I never really had a problem with the neurologist. It’s the fact that I can’t get it control. It’s a university hospital. And the fact I also met with a dr from the Neuropace center at an appointment. They are able to see the seizures that RNS caught and failed but they are unknown on why the seizures are so bad. Yes I plan on talking with him about it further. But I think even if they tell me to continue like they have, I will still have it removed. I don’t want to be cautious of something in my skull that isn’t working for me. I’ve had it since 2015. It’s a hard decision because I have been trying to be positive and hoping for best

REPLY
@lsittll

Hello dontlikerns!
Those are horrible things to experience. I would want to pull that RNS out of my body. The same way I feel about the VNS I have. I will eventually have this horrible implant removed and I can fully understand why you want yours removed. I would let the doctor know it has not been of any benefit and that you would like it to be removed.

@lsittll

Jump to this post

Hello thanks for the response

REPLY
@amandajro

Hello @dontlikerns and welcome to Mayo Clinic Connect. I am sure it is frustrating to read only positive reviews on a device and find yourself experiencing it differently.

I noticed that you posted two similar posts on this topic so you will notice that I have removed the other version to allow members like @lsittll to connect with you here.

Are your doctors favorable to removing the device at your request? Have you ever considered seeking a second opinion at a teaching hospital where a team of doctors would focus on you?

Jump to this post

Hello @amandajro
I must wait until I am 64 and I have Medicare if I want it removed because the removal is a surgical procedure that is done outside of a doctor's office. I have a large copay with a Medicare Advanced plan. The government is controlling the matter.

REPLY
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