NeuroPace RNS Surgery Recovery: 3 Months

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!

Salt Lake Comic Con 2016

I've never been to Comic Con before.  I know, surprising, considering how much of a Star Wars freak I am. It's just something that I was either never able to do, or I wasn't interested enough in the people who were going to be there to purchase a ticket.  It can get very expensive depending on the package you want to buy.

Well, this time around they managed to book Mark Hamill, the actor who plays Luke Skywalker!  He was scheduled to do a panel (talk to the crowd) today.  To get into this panel, you had to purchase a ticket and were then placed into a lottery.  I didn't purchase a ticket since it wasn't a sure thing that I'd get to see him. Well, the people of Utah spoke because not only did they move him to the Vivint Smart Arena where the Utah Jazz play, and seats 20,000 people, but they also took the lottery system away.  All you needed was a $20 ticket and you could go to his panel.  I was still hesitant to go, since it was scheduled on a Thursday, and I didn't know what I would do since I worked that day.  I was bummed.  How often does LUKE SKYWALKER come to Utah?!?

Last Sunday, as I was wishing I could go, Nick told me to just purchase the tickets and be done with it. Holding my breath and shaking with excitement, I did just that. Since I'm a teacher, I received a discount on the ticket price (NICE!) and with the help of my mom and sister, we put a plan together, and I was set to go. I was going to see LUKE SKYWALKER on Thursday. I was excited; and I mean really excited!

Monday, Tuesday, and Wednesday seemed to take FOREVER to get through!  And then this morning, my sister and I left for Salt Lake at 5:30AM.  You could stand in line as early as 6:00AM.  I KNEW that there were going to be HUGE lines to get into the arena, and I wanted the best seats possible.  We arrived around 6:30AM and I was right; there were already many people in line.  We made a VERY fast walk to one of the lines, and ended up standing behind only 4 people!!

For the next 2 hours before the arena opened to the public at 9:00AM I was caught up in different conversations about Star Wars with those around us.  I need to give credit to my sister.  She doesn't know much about Star Wars, so I needed to "dumb down" what everyone was saying and then she got it.  I had told her earlier in the week that she was going to be introduced to my CRAZY world of Star Wars geek, and it had begun. When those around us realized she didn't know a whole lot about it, they were funny and told her they'd "forgive her", and "indoctrinate" her into our crazy world!  Through it all, she kept a smile on her face.

All of the people who had VERY expensive "super fan" tickets were able to go into the arena earlier than us. I wasn't concerned about them taking our seats because I knew we had general admission and they wouldn't be sitting near us. The doors FINALLY opened a little after 9:00AM and I FLEW inside to grab the best seats possible.  Getting to the arena as early as we did paid off again, as our seats were right behind those who paid hundreds of dollars!

Best hashtag EVER...and I don't even use Twitter!

After we secured our seats, I happened to discover there were "visitors" back on the main level of the arena. I went to investigate and found this...

 Hello, Kylo Ren!

The Empire...

I don't know where they found the guy in this suit, but he was really tall! 

And look who managed to get a picture with Darth Vader and the Emperor's Imperial Guards!! My life is now complete!

Sitting in the arena, I found myself getting more and more excited.  It was worse than a kid at Christmas!  It was like I was back in the theater last December waiting for The Force Awakens to begin!  There was an MC who kept the crowd excited, and screaming.  He told us that the largest Comic Con panel ever had 8,500 people in attendance. They were hoping that we could beat that.  Salt Lake and San Diego Comic Con have a MASSIVE dislike for each other.  San Diego founded Comic-Con, but Salt Lake has taken it to an ENTIRELY different level, and San Diego isn't happy about it at all!  Salt Lake was hoping to beat the record as further proof that theirs wasn't going away any time soon.

And then it happened:  Mark Hamill, the one and only LUKE SKYWALKER, came onto the stage and the ENTIRE arena, which was COMPLETELY filled, (and probably means we SMASHED the "panel record attendance") stood up and went into screaming hysterics for a good three or four minutes.  I did it right along with everyone else.  I'm loosing my voice, and I DON'T CARE!

This picture was taken by the media and posted online

These were from the jumbo tron, and taken by me

Our actual view from where we were sitting

Always grateful and hilarious, Mark let us know that we are his 20,000 new best friends.  He also reminded us that the one question he wasn't allowed to answer was because he was contractually obligated NOT to say anything and that we'd find out next December when the next Star Wars movie comes out!  

He talked about his voice acting, and spoke in his Joker voice quite a few times.  The crowd went wild, of course.  He told us that the choice to make Luke sound so whiny in A New Hope was because if there were sequels, he wanted the character to show growth.  That made me like him even more.  The "whiny" Luke is something that MANY people can't stand.

The best story was when he told us about how everyone came back together for The Force Awakens. Carrie Fisher (princess Leia) was quick to jump into it.  Mark was a little more hesitant and decided he'd only do it if Harrison Ford (Han Solo) would do it. Thinking that would NEVER happen, he figured he was in the clear!  Of course he was happy that he did come back to the franchise.

Mark Hamill is a very funny man.  The entire hour the crowd was laughing, screaming, and clapping. A person in the audience asked if he knew that Princess Leia would turn out to be Luke's sister.  He didn't, and told us how sad it was the the ONLY woman in the galaxy, who Luke and Han both had a crush on, would end up being related to Luke!

The hour went by VERY QUICKLY and before we knew it, the panel was over. Someone would walk around the stage with a sign letting him know when there were 10, 5, and 1 minute left. Then when the sign saying time was over came around, he picked it up and promised us that the next time he comes, it will be a 2 hour panel. Again, we screamed with excitement.

As he left the arena, everyone once again stood up and screamed.  He walked around the stage, shaking the hands of those who paid for the really good seats...I was jealous!  Then the MC came back out and told everyone that William Shatner (Captain Kirk) from Star Trek was coming out in 15 minutes.  The rumor is that he demanded to be moved from the Grand Ballroom into the Vivint Arena.  I thought it was funny that he wanted to be there, since I didn't believe there was ANY WAY he could fill it with fans like Mark had. Once Mark was gone, HUNDREDS of people, including myself, left the arena!  I would love to find out how many people actually stuck around.  

So I did it. I was able to be in the same room as an actor from Star Wars. And not just any actor from my beloved franchise, but in the same room as LUKE SKYWALKER!!! I still can't believe it and I'm purposely writing this blog now so that I'll always have it on record for when I forget about the details in a year. Remember seizure patients have horrible long-term memory!!

Needless to say, I will be keeping my eye on who is coming to Comic Con twice a year!

NeuroPace RNS Surgery Recovery: 1 Month

Truer words have NEVER been spoken!!  I found this today and laughed for a good 10 minutes because I've done each one of these over the past month!!!

Wow.  It's already been a month since I had my surgeries.  Amazing.  On a whole, recovery has been going well.  However, the  past two weeks have been full of ups and downs.  Last week I was feeling pretty good. My hearing returned to normal, which was fabulous. I wasn't waking up with migraines any more, which was the most fabulous improvement!  I have a walking exercise DVD and started doing it each morning to help build my strength back.  I took it nice and slow so that I didn't overdue it, and Brandon did his version of it with me to keep me company!  Three of my friends dropped by to visit, which is a big deal because not only am I a hermit who likes to be alone, but I actually had the energy to visit with each of them!  I even had enough energy on Sunday to do my hair and make-up for the first time since surgery and go to a family dinner.  I felt like last week I had taken two giant steps forward in my recovery process.

This last week has felt like I've taken three enormous steps backward.  Monday, my body decided it was very unhappy with either my dinner or something else and forced me to get rid of it.  It was SO MUCH FUN!  Tuesday, I was able to walk around Wal-Mart for quite a while, getting Brandon clothes for the upcoming school year.  I also had an optometrist appointment and made it through.  By the time we got home late that afternoon, I was done for the day.

By Wednesday I was exhausted again, and I stopped using the walking DVD.  All I wanted to do was sleep all day like I had during the prior three weeks.  I did manage to do my nails, which was a big accomplishment, but that was about it.  I had been making dinner for the past few days because I had the energy to do it.  That also just wasn't going to happen.  It was very frustrating.

Thursday, I had one of the worst migraines I've had since my surgery.  It lasted the entire day, even with the pain medication that I had.  It was a miserable day.  My body once again decided it was unhappy with my dinner and I lost it.  It's one thing to have a horrible migraine, but to also have an upset stomach at the same time was almost more than I could handle.

Thursday evening, after my stomach was empty, something incredible happened.  Nick and I checked how many doctor's bills had been posted to our account, and how much we were going to owe.  We were prepared for the bills to be enormous, and figured we'd be dead before they were paid off!  This surgery had accrued around $200,000 dollars, and we only owed a few thousand!  We couldn't believe it since our insurance has often not been the greatest. Needless to say, we've never been more grateful to have medical insurance!

Since the Monday after I came home from the hospital I hadn't had any seizures.  I can usually go up to twelve days without having one, if I'm lucky. This time I was closing in on almost FOUR WEEKS since having one. Where this was phenomenal, and a good thing, I was also a little more than disappointed.  As dumb as this sounds, I began to wonder if all it took was a doctor messing around inside my brain to fix it, and that all of this recovery crap had been for nothing!  Well, my seizures finally reappeared yesterday. When I have a seizure, I will usually have a total of three throughout the day.  We have no idea why, it just seems to be my pattern.  After coming back from getting the mail, my first one came.  I was getting some water and that's all I remember.  I was extremely dizzy for the remainder of the day, and two more seizures came within the next few hours.  I was more than a little relieved; again, as stupid as that sounds.  Those three seizures, along with the dizziness, left me sleeping the rest of the day.  As I write this now, I'm beginning to get dizzy.  Oh well, I'll continue to live with it!

During the first few weeks of my recovery, Brandon's friends stayed away from the house.  They had no idea that I'd had surgery, and I was really grateful they stayed away because not only was the doorbell not ringing, but Brandon was around to help me.  For some reason, that all changed this last week.  If it wasn't someone knocking on the door, it was the doorbell ringing...CONSTANTLY.  I didn't want his friends coming into the house because of how I was feeling, and I REALLY wanted to sleep, so he would go play with them.  Apparently this upset some of his friends, and they would go back down the stairs crying like little babies!  Oh well.  I asked Brandon one day if he was upset that I didn't want his friends coming into the house and he said no because he understood that I was still recovering and needed to rest.  Such a sweet boy!  By Thursday I had to put a note on the front door explaining that Brandon was out playing, and to not ring the bell because I was sick!  Apparently that didn't work because Friday and Saturday morning one of his friends rang our bell at 7:40AM!  Looks like I'll be having another conversation with this boy!

I have nine days left until Teacher Training begins, with 17 until the school year commences.  I'm more than a little worried.  I know that I can do this, but I'm hoping that my body cooperates.  This coming week I plan on using the walking DVD, and while resting in the afternoon, doing as much as I can to prepare my body for training. Luckily, I'll be sitting the majority of the day during this training, so that's a major plus!  I'm excited to see my friends again, but I feel like I've lost an entire month of my vacation since I've done nothing but spend it recovering!

I'm also excited because I'll be getting a haircut in two weeks, and I can finally COLOR MY HAIR!!  When I did my hair last Sunday, I noticed that the right side, where my hair was shaved off for surgery, is much more layered than the left side now, since there's less hair.  That will be fixed with my haircut!  The pictures of my hair are beginning to embarrass me! I'm reminded each day just how long it's been since I've eliminated the gray color that is fighting to be seen by all!  I'm also impressed by how fast the hair the doctor had to shave is growing back.

You can see from the above picture the difference in the layering from the left and right side.

Above is a great shot showing just how fast my hair is growing back.

Ending on a happier note, my scar is healing wonderfully.  I still can't lay on my right side, which is annoying, but washing and brushing my hair no longer hurts.

Each day I try to remember this!

Have a great day everyone!!!

Poking Fun At Star Wars

Most of you know that I LOVE Star Wars...minus the prequels, that is.  A few months ago I stumbled across two YouTube channels that have provided me with hours of laughter.  One is titled "Everything Wrong With..." where movies are picked apart and made fun of because of the ridiculous issues they present.  The other channel is titled "Honest Trailers" where they sort of do the same thing.  Instead of telling us what we want to hear and see about the movie, this channel gives us trailers about how the movies really are!  Sometimes they are simply nitpicking, but they are hilarious!

There are TONS of movies reviewed on both of these channels, but I'm going to focus on my favorites today.  First off, the Star Wars Prequels.  The prequels are the ONLY movies on the ENTIRE "Everything Wrong With.." channel's list to have a part 2 since they are so bad!  These run long, but they are worth every minute...especially if you're in need of a laugh or despise the prequels as much as I do!!

Everything Wrong With The Phantom Menace:






Everything Wrong With Attack of The Clones:






Everything Wrong With Revenge of The Sith:





Wasn't that fun?!?  I told you they were accurate!!!

Now we come to my babies.  They did A LOT of nitpicking on these, but they also had quite a few good points!

Everything Wrong With Star Wars:




Everything Wrong With The Empire Strikes Back:




Everything Wrong With The Return of The Jedi:




Everything Wrong With The Force Awakens:




And now on to the Honest Trailers YouTube channel!  They don't have an honest trailer for The Empire Strikes Back and Return of the Jedi yet, which is odd, but all of these trailers are ABSOLUTELY dead on...even episodes 4 and 7!!!

The Phantom Menace:




Attack Of The Clones:




Revenge Of The Sith:




Star Wars:




The Force Awakens:




If you stuck around long enough to watch all of these; I'm impressed!  They were awesome, weren't they? Now no one can say I can't take a joke or laugh at my favorite movie franchise!!!

NeuroPace RNS Surgery Recovery

Isn't this a happy thought?!?

It's been two weeks since my last brain surgery.  Recovering from brain surgery is something I never thought I'd be doing, so I've been learning a lot about just how difficult it can be. I've learned very quickly how to listen to my body so that I don't find myself overdoing it and making myself worse.

My first week home I found myself with horrible headaches, which was worse than the pain I felt from the surgery.  My entire body was sore, and I spent that week laying on the couch, not doing anything but sleeping and watching Netflix.  Nick was incredible, making sure I had anything I needed.  He had to go back to work that Thursday, so my 9 year old son Brandon took over.  We have walkie - talkies and we would use those to communicate with each other whenever I needed something.  Nick would run and grab us food during his lunch break when he went back to work that week.  Without them, I don't know if I would've made it through that first week home.

It's amazing the things we take for granted.  Simple things like being able to wash and blow dry your hair by yourself...or to even do it at all!  That first week I was completely unable to wash my hair by myself.  It made me nervous because the last thing I wanted to do was make anything worse.  The right side of my head was VERY sore, and the last thing I wanted to do was touch my stitches!  Blowing my hair dry was a painstaking process.  Having long hair made it so that you couldn't see the huge scar and stitches on my head, which is fabulous, but it also made it GUT WRENCHING to dry.  My mom did it the first time, and then Nick had to do it the next 4 or 5 times. The first time Nick did it, I really wanted to dry the left side of my head where there were no stitches. I wanted to see what I could do because I was stubborn that I was so dependent on others. That proved to be more than my body could handle and it actually made me sick.  Lesson learned: SLOW DOWN!!

I tried to do a basic nail polish at the end of week one, and my hands were shaking so badly that I almost couldn't finish it!  I'm finding that I'm very stubborn through this healing process and I want to be back to 100% RIGHT NOW! I know I just had 2 different brain surgeries, but it's just frustrating.

Towards the end of week one, I began noticing that my ears were ringing.  Any beeping noises, shrill TV sounds, and even people talking at their normal voice level began to really hurt.  It felt like my right ear was clogged and my left ear was compensating for it.  After talking with the doctor, he believes that I have inflammation due to the surgery and the fact that I had an incision pretty far down my ear.  Over time it should heal as my incision heals. I look forward to that stopping soon (which probably won't happen) because it's really unnerving and annoying.  The last thing I want to have happen is some sort of permanent hearing loss.

The beginning of this week, week 2, I had my stitches removed.  Unfortunately, I won't be able to color my hair for another month, maybe two.  I'm really grateful that I'm not in public very often because my hair REALLY needs to be colored!!  It's embarrassing! I almost did it before my surgery, but I didn't know if I was going to have hair when I left the hospital and didn't want to waste the money!  I have a lot of scabs on my head on the incision site, and they will gradually fall off...yuck!

This week it's more difficult to sleep well at night.  I still can't lay on my right side when I lay in bed.  It becomes VERY uncomfortable not being able to move around at night and find a different position to sleep in.  You can only sleep on one side of your body for so long before it becomes completely uncomfortable. This morning I woke up with a sore neck and shoulders. During the day I have no trouble sleeping on our couch since it's one that kicks out, so I might be sleeping there for the next few days.  I'm guessing it's easier to sleep on the couch because my head is much more upright than at night in bed.

I'm finding myself with differing levels of energy.  One day I was feeling great and was able to clean up around the house, where yesterday after trying to once again do something fun with my nails, it was a bust and I was exhausted and didn't want to leave the couch.  Washing and blow drying my hair continues to drain all my energy, which makes me feel helpless. I keep trying to remind myself that it's one day at a time.

I realize it will take months, maybe even a year to completely heal, but I really want to be healed faster than it will actually happen.  I'm impatient because I want to do things I did before the surgery, but I just can't.  I can handle the lack of energy, but I really want to sleep like I used to, not have my incision sore, and my hearing restored.  As dumb as this sounds, I miss having the energy to do fun designs with my finger nails. I desperately want to exercise again, even if it's simply doing a basic walking DVD. Naturally, I'm gaining weight, and after all the work I've put in to loose it over the past year, this makes me sad.  

School starts the end of August.  I should be ready to go back to work and start the school year off right. My actual RNS device should be turned on by the end of August.  I'm excited for it to be turned on so we can see what it does for me.  In the end, I have to remember to...