Responsive neurostimulation (RNS) as an epilepsy treatment?

@caseybach

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 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.

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?

@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.

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

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

Good morning, @absentsenior 🌷
It's been a little while since we last connected directly — it's hard to believe how far into the year we already are, and it made me think of you. I remember how calm and positive you were as you prepared for your RNS surgery earlier this year, and I've been hoping things have continued well for you since.
Whenever you feel like sharing, I'd love to hear how you've been — how you're feeling, and whether the device has been bringing you some relief.
Chris

@santosha
It seems odd to have someone I don't "know" to be concerned about me, and is more than appreciated. I've been going through a rough patch. It's still very early in the process.
As my surgery, was only 6 months ago. I tend to be rather drug resistant and have been most of my life. My doctor put me on a drug called oxcarbazepine. I didn't do well on it. And it tended to magnify instead of reduce.
So I am in the process of titrating off of it. When I start at the first step down, I woke up one morning to a feeling of being completely lost to the point of not knowing my way around or through my home of 15 years. I haven't been able to find my daily journal and that is driving me nuts, and I've found so many things misplaced in the house to illogical places. An example would be finding ice cream in my dish cabinet, not a little on a plate but the entire carton. I experienced a gut level sense of fear that almost drove me to a corner to just sit and try to hide.
It wasn't logical or sensible and was completely without reason. But it happened. On top of that, I retired two weeks ago because I didn't feel I could service my clients as well as I prided myself in. Many have become good friends over the 2 decades I've known and helped them, and they are worried about me, as the retirement was unexpected. It's difficult to leave those you've known for so long behind and have to trust that someone else will take care of their travels and do it well. I should be hearing from my doctor today and suspect it will be a phone call as he tends to do that if he's concerned which i'm thankful for because it'll be much easier to explain the issue. I have a sister that I am very close to. That to some degree is my flotation device (LOL). We've been very close throughout our lives. It's one of those relationships where she knows more about me and I about her than we know about ourselves. I will be part of tomorrow's session. Although without a computer and must go through my phone and I have yet to have luck to be able to make it work as a 2 way communication during those sessions. It's an Android. I'm not sure if that's the reason or what? But it is what it is. I truly appreciate your concern and have been very fortunate to have a sister I am very close to and a doctor I adore. If you feel any reason or a need to reach out outside of this group, feel free to private message me on Connect. I am in AZ. Thank you very much for your query.

@absentsenior - just to let you know that for your own privacy and security, I've removed your personal phone number and exchanged it for private messaging you on Connect. If you've not yet used it, you can find the little envelope between your profile and your notifications in the top right of any Connect page.