Tuesday, January 10, 2017

NeuroPace RNS Surgery Recovery: 6 Months

Well, it's been 6 months since my RNS surgery; I can hardly believe it's already been that long!  If you're unfamiliar with my story, you can get caught up here.

In the three months since my last update, I've experienced many lows.  The most frustrating thing is that my seizures haven't really decreased.  Instead, they have increased.  We're not talking about having a ton more each month, but enough that it's upset me. This surgery wasn't an easy decision to make AT ALL, and it was done with the reassurance that my seizures would decrease. I went 24 days without having a seizure right after surgery before the device was even turned on and I began wondering why I'd even had the surgery if this time frame between seizures was possible! The goal with this surgery is to NOT HAVE SEIZURES, not to have MORE of them than BEFORE brain surgery!

With this in mind, we became more aggressive when it came to my RNS adjustments.  During the last 3 months, I've only had the device adjusted twice.  I wanted it adjusted much more often, even two or three times a month if possible, because again, I was ready for this to be done, and was frustrated. I needed to see more positive results.

I was told by my neurologist that I can't have the device adjusted weekly, or even bi-weekly because as I transfer data from my computer to the NeuroPace "home base", it learns more and more about my brain to present the most accurate information to my neurologist so it can provide me with the best results.  The "home base" needs a good month of data to know how to best make it all work. My neurologist told me that it will probably take a good year before there is enough data to really get my seizures "controlled". This really frustrated me. I was looking forward to possibly applying for full time teaching jobs in March for the upcoming school year in August. I can't do this with my seizures still uncontrolled.

The past three months I've had to remind myself that this is a process, and I need to exercise PATIENCE while it does what it needs to do. This isn't going to just magically fix itself over night. My brain has been continually screwed with for almost 20 years as the seizures have taken over. I suppose I can continue to wait while this surgery is given the opportunity to do its thing.

Okay, now that that's out of the way, here are the much more positive things that have happened.

Physically, I've pretty much completely healed.  As you can see from the picture, my hair has started to grow back (the hairs sticking up on the right side of the picture!) It's going to get interesting during the next few months because this chunk of hair doesn't want to lay flat with the rest of my hair!

Where my seizures have increased, they continue to change in good ways. They are shorter in length, and MOST of the time I know exactly when they're coming, and can snap out of them much quicker. One morning I was getting ready for work, and was fixing breakfast.  When I went to pour milk into my cereal, I almost put water in it instead because I went into a seizure!  Luckily, I was able to catch myself right before the water went in!

I went to see Dr. Strange in the theater in November. There is a part of the movie where there are A LOT of strobe lights. I was able to make it through that part of the movie without any trouble, knowing that my mom was watching me the whole time out of the corner her eye!

My scar has also healed.

I'm so grateful that I've taken the time to write these experiences on my blog. One reason I've done it is because if it helps just one person decide whether this surgery is right for them, or simply helps give others more information about it from an actual person, instead of just a doctor's perspective, then it's worth it. Another reason I'm glad I did this is because my memory is garbage.  I don't want to forget this experience; the good and the bad. This meme says it better than I ever could:

My hope is that this device does the trick. It's going to take longer than I wanted it to, but that's okay. Does it suck that it won't happen as fast as I want it to? Yes, yes it does. However, like I said, I've been dealing with this for 20 years; what's another year going to hurt?

I'll see you in another 3 months with an update!


  1. I can imagine how frustrated you must feel- that's how I felt about the VNS. I had it on for about two years, and it didn't work at all. I guess you're pretty early on in the implant, but it has been great to see your pictures and hear how it's been going. I'm not quite ready for the surgery- I'm trying one more drug- Briviact- and then I'll consider it more seriously. Thank you so much for posting! I look forward to hearing more from you.

    1. I'm so glad that I could help. If you ever have any other questions, please feel free to ask me!

  2. Hi my 25 yr old daughter had the RNS out in about 10 months ago. She went 8 months seizure free with it not being turned on. Then after about of recorded seizures it was turned on. She has been having many more seizures now and after almost 2 months since turning on the stimulator we r going in for her 1st adjustment. It seems like they should adjust more.often. my daughter is pretty discouraged right now. Thank you for.posting .

  3. Sorry meant to say she had the RNS PUT in...

  4. Sorry meant to say she had the RNS PUT in...

  5. HI, my 26yr old son is trying to decide if RNS would help. Its a big decision! He only gets 2-3 seizures a month and frankly I'm concerned about the feedback I've seen. Why do they wait so long to "turn it on" and why does it seems like there's an increase of seizures in the beginning? We are also hoping the device helps his cognitive thought issues as well, does anyone have experience with that?

  6. Does your son have a VNS device? How many medications is he on? I don't know if you've read my other posts, but it was a difficult decision for me. They wait to turn it on because the incision needs to heal. As to the increase in seizures, I don't know why that is, but it's a concern of mine.

  7. Hi Wendy, it is such a difficult decision. My son is on 3 different meds and is still not sure but needs to make a decision very soon! He has not had the VSN, we actually approached the doctor about the VNS and she recommended the RNS. I would love to chat with you more, on behalf of my son. My email is dougherty16@optonline.net, and I would welcome feedback and advice from anyone else as well.