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.



Saturday, June 10, 2017

New Kids On The Block: Total Package Tour in Salt Lake City






If you're familiar with this song it's PROBABLY because:
a) you are a girl who was in her early teens when it came out
b) are the sibling of the above teen
c) are the parent of the above teen

They are the original "boy band". They are the boys who made Backstreet Boys, NSYNC, 98 Degrees, and One Direction possible.  I don't consider The Beatles or the Jackson 5 "boy bands".

Since they arrived on the scene in 1986, I've been a DIE HARD fan of New Kids On The Block!  My late elementary, junior high, and early high school years were spent lining my bedroom walls with the posters that came out of popular teen magazines like Tiger Beat, and Bop. I had the buttons (both big and small) that we wore on our clothing. I listened to their music CONSTANTLY, and knew every dance move to EVERY song they created choreography for! I'm proud to say that I owned the poster of Jordan on the bottom right of this picture...and I loved EVERY MINUTE of having it up on my wall; yes, he is my favorite member of the group!




When I was twelve, I had the opportunity to go to a New Kids On The Block concert while living in California.  I had "nose bleed" seats in the highest and farthest section at the back of the arena, and don't remember much of it at all.  Those in charge of the event tried very hard to keep cameras out of the concert, so I have no pictures.  I do remember that it was an incredible show; especially since I was only 12 and obsessed with this group!  They broke up in late 1994.  Music had changed, the fans were growing up, and so we all thought that the era of the "hardest working boy band", a title that was absolutely appropriate for them, was over.

Enter 2008.  After a 14 year hiatus, New Kids On The Block joined up again, released a new album, and began touring again.  I was excited.  They toured with the Backstreet Boys (which was an INCREDIBLE show that I caught on YouTube!) and all the fans who loved them as teenagers once again found that love for them again!

Through the fabulous power of Facebook, I found out in December, 2016 that they were going to begin a new tour in May, 2017, and would be coming to Salt Lake City, Utah, on June 9th, 2017!  Needless to say, I was beyond excited because I live about 15 minutes away from the venue.  I started to wonder if I could actually accomplish this!  Since it was so close to Christmas, I asked my mom if she could help me out, and she did.  My Christmas present was two tickets to the concert!  I could hardly contain my excitement.  Sure, at that time it was still 6 months away, but after waiting 26 YEARS to see them again, 6 months was nothing!

As the time for the concert drew nearer, I began brushing up on their songs.  Turns out, they were still etched in my brain.  It was fun to discover just how much I'd remembered!  They released a new EP titled Thankful in May, so I began learning those songs.

Last Thursday, I prepared my nails.


And last night I wore my new shirt!


As my sister and I left for the concert, we were remembering that when I went to my last concert, she was only 9 and was deemed too young to go.  She's never been to a New Kids On The Block concert and was just as excited as I was.  Well....maybe not quite as excited, but pretty excited!!

When we got to the Maverik Center, we parked and walked to dinner.  It was hilarious because the majority of the people in the restaurant were attending the concert.  Women were wearing their New Kids On The Block shirts, you could hear conversations about the group, how long it'd been since they last saw them, etc. I've always been proud to be a New Kids On The Block fan, but this was the icing on the cake!

Walking back to the Maverik Center, I was stunned how many MEN, and young girls were there.  I figured it would be a bunch of middle aged women reliving their teenager years.  I'm guessing the men were dragged there by their girlfriends/wives, and the young girls were there because their AWESOME mom's indoctrinated them to the greatness that is New Kids On The Block!  Over the past few months, I've listened to them more in my car. Brandon has also become a fan of the group. He was VERY bummed to not be going with me!


My sister and I.  We're going to pretend that's NOT my hair sticking up in the back!  I hate pictures of myself!



The place was PACKED and our seats were even better than I hoped they would be! As we kept walking closer and closer to our seats, and discovered how close we were, I became more and more excited to the point that I feared I might hyperventilate!  The stage was directly to the left of us. Take note of the blue wood in front of us; it will become VERY important soon!

Of course, merchandise HAD to be purchased!  I got the shirt, concert program, and a key chain.




Paula Abdul was their opening act.  She was very entertaining, performing her greatest hits.  This woman can still dance like it's 1990.  And she changed her outfits in about 1 minute between each song!


And then, the moment I'd been waiting 26 years for happened. This opening is from the first concert of the tour, back on May 12th.  It's the exact same opening as last night, obviously.



Let's just say I was screaming bloody murder as the countdown began!







The next two hours were simply amazing.  Realize that these 5 men are now between the ages of 44 and 48! The way they perform, you'd NEVER know that.  Wow. Writing that they're 44-48 suddenly makes me feel old! The energy was constant, and there were no real breaks, intermission...anything.  As a life-long fan, I appreciated this so much. It shows me just how much they continue to appreciate their fans.

Okay.  On to the most AMAZING moments of the concert!  Remember this picture?



On the other side of the blue wood is an isle. I keep up with New Kids On The Block through their Facebook page, and I'm glad that I do.  Many people have posted pictures from the tour, so I knew a little about what to expect.

They have a song titled "Tonight" from the album Step By Step.  The song lyrics are a play on many of their songs, and the way they said thank you to their fans back in the day.  The video is completely CHEESY, but here it is for the lyrics.



Before the concert started, I wondered if they would come through the audience like I'd seen on the videos I found on Facebook.  Well, they did...during this song.  The following pictures are blurry, but I COULDN'T CARE LESS!!

When they began singing this song they left the stage to walk through the crowd. Jon and Jordan came down our way first. You can see Jordan further down towards the right, with Jon in the forefront.



As Jon got closer to us, the screaming got louder and louder.  We all stretched out our hands, hoping to touch a member of the group we'd loved forever.  I was, of course, one of the people joining in, and all of the sudden JON SHOOK MY HAND!  A member of New Kids On The Block, the group I'd only been able to see on TV, or from the "nose bleed" seats, touched me!! Katie wasn't able to get his hand, so she asked me to shake her hand! I couldn't believe what had just happened.

A few minutes later, Donnie came our way.  After sipping some beer from someone a few people away from me (which was awesome!), he came right over to us and DONNIE SHOOK MY HAND!  Once again, ANOTHER member of my group touched me!! This time Katie was able to get it on it!  I was ready to completely die!


Jordan was maybe 20, 30 feet away, and I kept PRAYING that he would come closer. As he began to climb up onto the wood, he almost lost his footing and got down.



After he got down he started walking back to the stage.  This was as close as I got to my favorite member of the group.  But hey, how INCREDIBLE is this?!?




Joe and Danny both came pretty close, but got down before they came over to us.  Trust me, we tried!! You can think I'm crazy, and laugh at me all you want. I don't even care!  Donnie Wahlberg and Jon Knight shook my hand!!



 Yes, that is Donnie standing on a grand piano using pyrotechnics to make it look like it's on fire!


I was pretty excited because Jordan was on our side of the stage the majority of the night!  It's like he KNEW I was there and wanted pictures of him!!!

At one point, they went down "memory lane", revisiting songs from their very first album, which was a trip! This video isn't from last night. Someone posted it on YouTube from a concert on May 21st.




Joe went to the stage towards the back of the arena to sing "Please Don't Go Girl".  I always knew he could sing, but oh my gosh, this man is INCREDIBLE to listen to when he sings solo!  He puts his heart and soul into it, making it all the more enjoyable to watch!



Towards the end of the night, they sang "I'll Be Loving You (Forever)", which is a "staple" for Jordan. Not only was it amazing, as he still has his FANTASTIC falsetto, but he became very emotional at the end. It looked like he was crying.




I will ALWAYS be a "Blockhead", as we've affectionately become known.  I can't think of ANY OTHER GROUP who came together, broke up, and then came back to find their LEGIONS of fans waiting for them!  We grew up with them. I've also always been grateful that they had decided that they wouldn't come back together as a group unless they all wanted to do it. Many "boy bands" will tour again without all of the original members (Backstreet Boys). It speaks to their bond as friends, and family.



This group of men have gone from this:



to men who can still do this 31 years later:



I left the Maverik Center with no voice, and hardly being able to hear.  I also didn't care one bit! The screaming never stopped, and it was the most FANTASTIC night! The following song is beautiful and one of my favorites. It was written for the fans showing how thankful they are for us. It's on their latest EP Thankful.



If you ever wonder why New Kids On The Block fans are so loyal, this is why:


Here's a list of the songs they did last night, and the order they were performed:

One More Night
My Favorite Girl
Dirty Dancing
You Got It (The Right Stuff)
Remix (I Like the)
Block Party
Tonight
Summertime
Games
Cover Girl
The Whisper
Stop It Girl
Popsicle
Be My Girl
I Wanna Be Loved By You
Didn't I Blow Your Mind
Call It What You Want
Valentine Girl
Happy Birthday
You Got The Flavor
Dirty Dawg
Never Let You Go
If You Go Away
Peace To The World
This One's For The Children
Hard (Not Lovin You)
Single
Please Don't Go Girl
Thankful
Step By Step
I'll Be Loving You (Forever)
Hangin' Tough / We Will Rock You


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