Three months out from surgery and I'm completely healed. I can sleep on my right side again, my hair is growing back, and my scar can't be seen by anyone. I'm exercising, and am back at work, having fun. All my coworkers were so excited to see me and hear about what had happened when school started. I was stunned by how many people found out through word of mouth. Everyone has been so kind, offering help in any way possible.
Look how fast my hair is growing back! I have sideburns again!!
My scar, 3 months later
My RNS device has been "active" for about 2 months now. Since that time there hasn't really been any decrease in the amount of my seizures, which has surprised us. What has changed, however, is what happens to me while I'm having a seizure.
In the past, my seizures have caused me to completely "zone out" and not be aware of what's going on around me. When the seizure was over, I'd have no idea what had happened during the seizure and would need those around me to fill in the blanks. During the 8 weeks since the device has been turned on, I am now aware of what is going on around me during a seizure. I can't quite continue having a conversation, but I don't need anyone to fill me in on what happened. One day I was showing a bunch of girls at school pictures of my nail manicures. I was aware I was in a seizure, and I was able to continue showing the girls the pictures. I remember realizing I was having a seizure, actually thinking to myself, "Wow, you're in a seizure and you're still scrolling through pictures on your phone! And you are able to have this conversation in your head!!" It was very surreal. Unfortunately, I still have the "old seizures", but they are few and far between, which is FABULOUS! The fact that I'm aware they are happening, and can maintain control of what I'm doing has made this surgery completely worth it! Another change I've noticed is that when I have one of the "new type" of seizures, I no longer have three. In the past, if I have one seizure, it's a guarantee that before the day is over, I will have at least 3. We have no idea why, it has just become my pattern. This has been a welcomed change.
Next week my device will be adjusted, since the number of seizures hasn't decreased, but has increased. It's taken a few weeks to get this appointment put together, since people from Neuropace have to fly out to Utah from California and make the adjustment. This is still such a new procedure that even my neurologist continues to learn how this all works! I'm excited to see what new changes the adjustment will bring. I'm hoping that the amount of seizures will decrease. We will have to wait and see.
I've had many people ask me how the process of getting information to the computer and then having the device respond to me works. I still don't know all of the details, and I'm hoping to understand more of this when I have the device adjusted this week. I have pictures to show you regarding what I do with the computer.
Here is the wand that I use. This wand goes on top of my head where the device is placed.
Each time I begin, I test the wand strength, making sure that I have it in the correct place, directly over my device.
Once I know it is in the correct place, it begins transferring the data from the device to the Neuropace system.
I do this every few days, and especially on the days when I have a seizure. Like I said before, I don't understand how this exactly works, but I look forward to getting more information about this as Neuropace receives more data from me.
Finishing on a fun note, the hospital that I had my surgery in, Intermountain Healthcare, does an annual report, highlighting the new technology the hospital offers. They pick a few people who have been helped by this technology and produce this report in both a digital and paper copy. I've been asked to be interviewed for this annual report. People will be coming to our house to conduct the interview. Apparently this will take a good 2 to 3 hours. I'm told that this is because they need to set up lighting and sound equipment. It's like a TV show being filmed in my house!! Hopefully I won't come off looking stupid...I've never done this before!
I'm excited to be able to help others decide if this surgery is for them. There isn't a lot of information about it, and I've sent my blog posts to my neurologist so that she can give them to others with questions, concerns, and fears. I hope that these posts are able to help those looking for information about this procedure.
I'll post all about the experience once it's completed!