Wednesday, July 5, 2017

NeuroPace RNS Surgery Recovery: One Year Later

I can't believe that it's been a year since my RNS surgery.  If you're unfamiliar with my story, click HERE.

My last update was 6 months out of the surgery.  I would've done another update at the 9 month mark, but there was nothing to update.

A year later, and physically you wouldn't know that I ever had surgery.  My scars have completely healed.

This picture was taken when I was in the hospital and highlights the scar on the right side of my face where my sideburns had been. 

 This picture was taken the day I came home from the hospital

This picture was taken three weeks after my surgery.  You can still see the scar by my ear, and you can tell that my hair had begun to grow back.

This picture was taken today. Notice that you can only see the scar if you look VERY closely!  

Now to show you how the large scar across my head has healed.  This picture was taken the day I left the hospital.  I worried for a long time how this scar was going to heal.

This picture was almost three weeks later. The nastiest part about this scar healing was the fact that there were scabs of skin forming around the incision that were falling off....yuck!

A week later the scar looked A LOT less scary!

This picture was taken in October, 2016; about 5 months after surgery.

This picture was taken today.  My husband had to hunt through my hair to find the scar!  Needless to say, it healed very well.

Now on to show you all how my hair has grown back.  I had come to terms with the fact that I was going to loose hair during this surgery.  How much, I didn't know.  The only noticeable hair loss was on my right side, where my sideburns had been.

This was taken one month after my surgery.  You can see where my hair was shaved, and that it was already growing back.

Taken in October, 2016, you can see that my sideburns are growing back.

This picture was taken today.  You can see the hair closer to my ear is what had been shaved off.  It's grown back quite quickly, and it's not obvious that the hair closer to my eyes is longer.

I also had to deal with another section of my hair growing back.  This was a little more of a nuisance, simply because of where it was located.  Here's a picture of it from October/November, 2016.  Sometimes it would stick out like this all on it's own, which drove me crazy.  I had other layers of hair on top of it, but occasionally the new growth would pop out. Luckily, having long, thick hair made this easier to deal with, but once in a while I'd see it sticking out like this and I would have to laugh!

And this picture was taken yesterday of the same section of hair.  It no longer pokes out, and lays flat like the rest of my hair.

Physically, I've healed very well.  Emotionally, the story is different.

Up until last week when I had my RNS device adjusted, this picture was EXACTLY how I was feeling. I was having VERY mixed feelings about this surgery and whether or not it had actually done any good. A year later, and I am STILL having the same amount of seizures.  They are STILL keeping me from obtaining a full time teaching job. The only difference in the seizures is that now I'm much more aware of them. They are shorter in length, and I usually don't need someone to fill me in on what happened during the seizure.

I'm STILL dealing with migraines and dizzy spells, and I'm STILL waiting to regain more of my freedom. Needless to say, I've been beyond frustrated as of late. After the surgery I'd been told that it would take about a year for this surgery to do its thing.  Let's just say that my expectations have been VERY different than the reality that I'm dealing with!

Last week, I went to have my device increased.  I expressed this concern with my neurologist and FINALLY received some information that made me feel MUCH better about my surgery!  From December 2016, to March of 2017 when I had the RNS adjusted last, it detected 100 instances of abnormal brain activity, or seizures.  Only 25 of those 100 abnormal instances actually became seizures.

Between March 2017, and June 2017, that detection went from 100 down to 47! In a three month period, the seizure activity in my brain decreased 50%! Out of the 47 that were detected, 29 became seizures. THAT IS THE INFORMATION I'VE WAITED AN ENTIRE YEAR TO HEAR!  If the seizure activity went from 100 to 47 in 3 months, I'm hoping that when I return to have the device adjusted in 3 months that the activity will be even less.

My neurologist also informed me that new studies are showing that it is taking about 2 years after surgery for the device to completely read the brain accurately.  That would've been great to have known last year, but I figure since I'm a year into this, one more year can't kill me.

As of today, I'm glad I had the surgery.  Like I said, the statistics I was given by my neurologist at my last appointment were exactly what I needed to hear.  This post would've been VERY different if I hadn't been given that information!  I'm hoping that this is the year that the RNS is able to completely sync with my brain and bring me the results I've been waiting YEARS for!

For any of you who are reading about my story and have questions about ANYTHING, please leave me a comment so that I can get in touch with you.  I would love to help in any way possible.