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.

Brain Implant Helps Control Epileptic Seizures

Back in October of 2016, Intermountain Healthcare interviewed me regarding the surgery I'd had there in July.  The interview was for their annual technology report, showing others how advanced Intermountain Healthcare has become.  I had a Responsive Neurostimulation device, often referred to as Neuropace, implanted in my brain over the summer to help control my seizures, and I was chosen to be spotlighted for the report. 

To get caught up on my entire epilepsy journey, and to learn what a Responsive Neurostimulator is, click here

To read about the crazy interview experience, click here

I'd told my 6th grade student's about the interview back in October, and they were excited to see the magazine when it came out.  I'd been told it would be ready in April of 2017.

Half way through April, a few of my students asked me if the interview had been published.  I'd completely forgotten about it!  This afternoon, my husband and I went onto Google to see if we could find any information about the magazine, and oh boy, what we found was AWESOME!  My name actually came up when I typed it in the search engine. There is an actual VIDEO interview!  I thought it would only be in print!

To see the video interview, click here

It was a trip watching the interview, and finding my name pop up on a search engine.  My son keeps saying I'm famous.  No, I'm not, but it is pretty cool!!

I hope that I am able to continue helping those who are struggling with the decision of whether or not to embark on this journey.  Brain surgery is a VERY big deal, and is a VERY scary idea.  It's been almost a year since I received the implant, and I make progress each day.  I'm having fewer seizures each month, and continue to be happy with my decision.

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!

Lights, Camera, Action!

About a month ago, I was contacted by people from Intermountain Health Center, where I had my surgery. Each year they interview people who've benefited from the technology that Intermountain Health Center offers.  The stories are put onto the hospital's main web page, and it's also printed in a hard copy.  My neurologist threw my name into the pile of those who could be interviewed and they decided that my story was interesting enough to highlight.

This last Friday my apartment was turned into the set of a TV show!  There were about 3 cameras, a microphone, 2 different kinds of lights, and 4 people here who were all involved to interview little ol' me! It was crazy to see how much equipment was needed, and watching them decide where I should sit, what should be in the background (turns out it was my Star Wars plates!) and where the furniture should be moved to.  All of this to make sure what they filmed turned out the best way possible.

Nick took Brandon and ran errands.  If Brandon had stayed, the entire process would've become all about him!!  He LOVES to be the center of attention, and nothing would've been accomplished! My mom stuck around in the event that I had a seizure; that way someone who knew what they were doing could help, and she was also there to help fill in any gaps in my memory since they were asking questions regarding things that happened years ago.

Questions were asked about when my seizures started, how they've changed my life, how Nick and I met. Many different topics came up.  My surgery in July and hopes for the future, and the discrimination I've had to deal with throughout the last 20 years were also spoken about.

It was nerve-wracking sitting in front of the camera, not knowing if I was giving them what they needed.  I felt silly.  I've been on TV before, but it was in high school while I was doing parades with the band. During those performances your family is lucky to even see you since the camera shot is constantly changing, and you don't even know where the cameras are...there was no time to get nervous! Apparently the man who interviewed me will have his voice edited out, so I had to make sure that I restated the questions in my answers.  The teacher inside of me laughed when he said that to me!  Isn't that what we're always telling our student's THEY need to do?!?

Look at all the equipment they needed just to conduct a small interview!!

After the interview, they went outside looking for a place where they could take pictures of me. Pictures...ARE YOU SERIOUS?!?  I was uncomfortable enough while they were interviewing me.  Now they wanted me to actually pose for pictures?!?

While the pictures were being taken, I began to understand, if only just a little bit, how the girl's who SUCK on America's Next Top Model feel!  The nice man snapping the pictures kept asking for ways he wanted me to stand, or hold my head.  It was just unreal.

It was also during this time that I was asked to call Nick and have him come back.  They wanted to shoot footage of the three of us.  Turns out Brandon was going to be on camera after all! Brandon got out some homework and they filmed us working on it at the kitchen table.  We all sat at the table and were filmed playing Uno. Then the three of us went outside and a cheesy "walking hand in hand" shot was filmed.  I can already picture how THAT footage will appear in the final copy!

This new piece won't be featured until next April, so they want to check back in with me around February and see how I'm doing.  Great...more time to loose more weight!  They also want to film my neurologist and I interacting together, so I'll be doing that next month.

I now have an idea about how shows like Property Brothers are shot.  I know that TV shows are edited, but certain shows have a very "cut and paste" feel about them, like Property Brothers.  I have a feeling this piece will have that feel.  I picture my interview being a voice-over, with the footage they shot of us in the background of the piece. I could be wrong.

Brandon is pretty sure that this will make him famous!  I'm excited to see the finished product. It was an exciting afternoon.  Between brain surgery, and now this interview, this year has been full of "once in a lifetime" opportunities...if you consider brain surgery an opportunity!!

I'll be sure to post the video as soon as it comes out.  I'm very grateful to be able to provide more information for those who are struggling with this decision.  This has been a big leap of faith for me, especially since there isn't a lot of information available for those who are trying to decide if this is the right choice for them. I hope that through this interview, and my continued blog posts, that I can help others who have questions.

Since the surgery, I've had more seizures than usual, but I know that this is a process.  I believe that in the next year or two, I will have been able to go a good 6 months without having a seizure, and will be on my way to gaining my independence back.

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!

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!!!