Responsive neurostimulation (RNS) as an epilepsy treatment?

Posted by caseybach @caseybach, Sep 9, 2020

I am wondering what experiences people have had with RNS. My son has had seizures since he was 7, has tried several different sezure medications and is currently on Brivacta, Onfi, Oxycarbazepine & has a VNS. Still having 4-6 seizures a month. RNS is our next hope, so if anybody has any personal experiences or info. I would greatly appreciate it. Thank you Casey.

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caseybach | @caseybach | Jan 21 12:54pm

In reply to @caseybach "@jakedduck1" + (show)

@caseybach

caseybach | @caseybach | Jan 21 1:06pm

No Logan still has the VNS & RNS & they are still functioning. He still continues on Onfi, Briviact, X-copri, Lacosamide.
Honestly for about 3 months after his LITT surgery it was very difficult. I really thought we had made the wrong decision. He experienced stroke like symptoms, he was having hallucinations & was sleeping much of the day. However, I think once we started to decrease his meds & the swelling went down. The new & improved Logan showed up!

absentsenior | @absentsenior | Feb 16 2:24pm

In reply to @absentsenior "@lisalucier I i am so buried in tests that I haven't had much time to think.I..." + (show)

@absentsenior 1 week to go. I'm as prepared as I can be and have a lot of support. I've not really seen any negative feedback on RNS. By this time next week, I'll be on the table.

Lisa Lucier, Moderator | @lisalucier | Feb 16 3:03pm

In reply to @absentsenior "@absentsenior 1 week to go. I'm as prepared as I can be and have a lot..." + (show)

Hi @absentsenior - so glad you are feeling prepared and have a lot of support. That will get you far.

You mentioned before about the challenge of keeping your head warm. Did you have to do a full head shave? Have you had other pre-procedure things to do or that you will do in the hours before the RNS? Did your doctor anticipate you'd spend a night or two in the hospital?

absentsenior | @absentsenior | Feb 16 5:32pm

In reply to @lisalucier "Hi @absentsenior - so glad you are feeling prepared and have a lot of support. That..." + (show)

@lisalucier Dr. Is anticipating 1 night but that depends on outcome. Do not recommend shaving entire head. I normally have long hair. I'm getting it cut into a short shag before the surgery. The reason is I will have to wash it every day after the first few days and I don't want to have to use a brush. I don't want anything pulling at my scalp due to tangles. The main incision is rather large. Think of the outline of a tupee on top of your head with 2 smaller incisions in the back of your head on both sides. A shag let's me just finger comb it without stressing the incisions.

Jake | @jakedduck1 | Feb 16 7:18pm

@absentsenior
Wishing you the best possible outcome and seizures will be a distant memory.
Jake

Chris Gautier, Volunteer Mentor | @santosha | Feb 17 5:36am

In reply to @absentsenior "@absentsenior 1 week to go. I'm as prepared as I can be and have a lot..." + (show)

Hi @absentsenior 💜
Surgeries always give me butterflies, so I truly admire your calm and positive attitude! It's wonderful to know you feel prepared and well-supported — that really does make all the difference.
What also helps me when facing something like this is my yoga practice and a good massage to release the tension. Gentle exercise, like walking, can also do wonders.
I'll be thinking of you and cheering you on from here - wishing you a smooth procedure and a gentle recovery. Whenever you're ready, I'd love to hear how you're doing!
Chris

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