Sunday, May 14, 2017

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.

Sunday, February 5, 2017

Armed Intruder School Drill

As a school teacher, there are MANY different drills that we have to practice so that in the event the disasters actually happen, we are prepared to help keep the students, and ourselves, as safe as possible. The most common drills, such as fire and earthquake drills, are those that I have practiced throughout my life starting in elementary school.

These days, the type of drills we practice each month has skyrocketed. Some of these include, Lockdown, Shelter in Place, Evacuation, and Active Shooter.

For those who may not know what these are, the Shelter-in-Place Drill is a plan that protects students and staff in the event of potential exposure to a dangerous chemical that could be released through:

- an industrial accident
- a chemical spill
- a break in a natural gas pipeline
- materials transported through our community
- a terrorist attack

A Lockdown Drill occurs when there is a threat or potential threat to staff or student safety in the area. Most often, this is due to police activity unrelated to the school, but in the vicinity. In a lockdown, the school is closed to all visitors, and students are supervised indoors.

Last year our school practiced its first off-campus Evacuation Drill, where we all filed out, in one very long line, and walked down the street to the local fire house.

One drill that hasn't been practiced at the school I'm currently at, is the Active Shooter Drill. The purpose of this drill is clearly in the title, and with school violence increasing, this is a frightening, but necessary drill to practice. The idea behind this drill is to run, hide, or fight, based on your situation when the drill begins.

Our school is set up with a phone app which every staff member is connected to. During each drill, we keep in touch with each other through texting, letting each other know when each teacher and class is safe, if anyone is missing, etc.

After our staff meeting Friday, I found out by accident that our principal was about to administer our first Armed Intruder Drill. There were staff children still in the building, and they had to be removed since we aren't ready to practice this with students in the building. Since I was free to go after the staff meeting, I almost left.

One thing to note before I continue. Our school is not very big. It's all on one level, making it far more challenging to run away without becoming a victim. With that in mind, here's what happened next.

Suddenly our principal comes over the speaker telling us there was an active shooter in the building, and to run, hide, fight. I was with two other staff members. We didn't know where the "intruder" was coming from, so we couldn't RUN. Instead, we closed our window blinds, pulled up the magnet from our classroom door so that the door was now locked, and turned off the lights.  We decided to HIDE behind the main teacher desk. Strange, loud sounds came next. It wasn't music, and it wasn't anyone yelling, it was just scary. It began to feel very real. We knew the "intruder" was closing in on us since the sounds were getting louder, and were prepared to throw anything we could at him. Periodically, I looked at my phone app and discovered that staff members were actually making it out of the building, which surprised me. Others were texting that after throwing things at the "intruder", he backed away and left. Since we were as armed as we could be, we were hoping it would be enough.

And then it happened. The "intruder" unlocked the classroom door. I figured that was going to happen. I didn't realize it was going to be so easy. He flipped the light switch on, which left us temporarily disoriented, and began throwing stuffed animals at us; the drill's equivalent to actual gun fire, or some other type of weapon. We threw what we could at him, our version of FIGHT. It was really just a stapler, water bottle, and a few other COMPLETELY pointless items and then he left. I'm pretty sure that had this been real, we would've been dead.

I couldn't believe how scared I was. My heart was POUNDING. The "intruder" was dressed in full riot gear, and he was wearing a helmet that reminded me of the one Ant Man wears.

Once he left our classroom, we didn't know which direction he went. We decided to try and RUN. By this time, our adrenaline had kicked into high gear, and we ran towards the nearest exit. To our dismay, the doors were LOCKED, which we didn't expect at all! We probably could've run to the next set of doors, but that would've put us back into the hallway where the "intruder" was. Hiding in the bathroom was our next best choice.  We turned off the lights, each got into a stall, locked it, and stood up on the toilet, like this:

A few minutes later, we heard the "intruder" coming AGAIN! We figured we'd be safer in the bathroom since he'd already been down that hallway. We were wrong! The lights were turned on again. I seriously thought I was going to have a heart attack. The "intruder" grabbed the door of the stall I was in and began violently shaking it. I managed to not pee my pants while standing ON TOP OF the toilet seat! Then suddenly, more stuffed animals were being thrown into the stalls, and one of them landed in mine. Once again, I would've been dead. After he left, and we were no longer hearing the sounds, we decided that we were done with the drill and walked back to the main office. We'd also died twice already, so we were finished trying!

The "intruder" was up there, with his helmet off. I went up to him, with a smile on my face, and told him that he wasn't very nice! I also informed him that had I known he was in full riot gear, I would've slammed a chair into his face when he first came into our classroom!! I didn't want to hurt an innocent person, but man, that would've been awesome to try!!

I learned many things from this drill:
- instead of hiding behind the teachers desk, standing by the classroom door with a chair ready to hit him when he walked in would've been MUCH MORE EFFECTIVE! Again, had I known he was in full gear, this would've happened. Whoever was in the room with me would've been armed with something MUCH MORE likely to hurt the "intruder" and help keep us alive.
- The RUN option is first for a reason. We were sitting ducks in the classroom. We had no idea where he was, but if we had, we would've kept running until we found an open door.
- Adrenaline isn't always a good thing. It was very difficult to make smart choices while my heart was basically in my ears! I don't think this would change though, had it been real.
-I'm much more aware of where I should run, if this drill were to happen again...or if it was actually happening.
- I'm grateful the students weren't there for this. There were staff members who genuinely lost control of their emotions. Even though we knew it was a drill, it FELT SO REAL. Some hadn't heard the last part about it being the RUN, HIDE, FIGHT and weren't expecting anyone to barge into their classroom.
-It turns out that most of the staff "died" during this drill. It really puts things into perspective when you realize how quickly life can change.
-I don't feel nearly as safe inside my classroom as I did before that drill. I also believe that we need more training about how to properly handle this, should it ever actually happen.

I'm hoping that there is some sort of school-wide debriefing, and that the gentleman who was the "intruder" leads that debriefing. I want to know what we did wrong, and how we can fix it in the future. Tips are always welcome!  It turns out that he works for the National Guard, and does this type of drill often.

I found this in my house yesterday. Technically it belongs to Brandon, but he's not into stuffed animals anymore since he's almost 10! In honor of the stuffed animals that were being thrown at us, I've decided to donate it to the cause!

Tuesday, January 10, 2017

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!

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