Thursday, July 21, 2016

NeuroPace RNS Surgery Recovery

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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...

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 Image result for keep calm and fly casual     

Tuesday, July 12, 2016

NeuroPace RNS Surgery

It's been a VERY  long week.  If you're unaware of what's been going on in my life recently, click HERE to get caught up.  Ready to find out how my week went?  Well, here we go.

Tuesday, July 5, 2016

My mom and I were told to show up at the hospital at 5:15AM...yes, AM.  My MRI was scheduled for around 7AM, and since this came together so quickly they wanted to make sure they could squeeze me in. The day started very normal.  The normal check in routine was done, I changed my clothes, and was taken to a room to wait.  Before I can have an MRI, my VNS device must be turned off.  It's a magnet, and would literally rip out of  my chest if I didn't have this done BEFORE having the MRI.  So we sat waiting for someone to come and take care of that.  My neurosurgeon's resident came in to take care of the VNS and also put some weird stickers all over my face.  Apparently they were going to help verify where the depth electrodes should be placed during surgery. I had to keep them on until that surgery, so I looked completely FABULOUS to anyone who saw me in the hallway!

MRI's have never been my favorite.  I don't consider myself claustrophobic, but when you're laying down and you have your head completely enclosed in a hockey-type mask that you can't take off, and are then pushed into an opening the width of your shoulders and asked to lay still while VERY loud sounds are happening all around you (so much so that they give you ear plugs), it can make even those who don't struggle with this uncomfortable!  The positive side is that I will never have an MRI again.  Where you can turn off the VNS making it no longer magnetic, you can't just go into the brain and turn the RNS off the same way. Thumbs up for my last MRI EVER!!!

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The MRI was done by 8:30AM, and it became a waiting game again.  I don't have cable television, so for the first time in about 4 years, I watched some.  Family Feud came on and mom and I laughed at the STUPID answers that were given.  I texted Nick and let him know that we weren't missing ANYTHING by not having cable...Netflix and the internet were just fine!

Around 11:15AM, I was told it was time for surgery and began to be wheeled up to the OR. Until this point I had been completely calm. I'd done all my research, and knew that this was the right thing for me to do. However, let's face it; I was being wheeled into unknown territory.  This was brain surgery, not having my wisdom teeth pulled!!  My emotions took over as I had to say bye to my mom and I lost it, despite the fact that I was in a public hallway, and elevator, on my way to the OR.

After arriving at the OR, the man who pushed me there put me right outside the door into an alcove where the beds are supposed to be put while we wait, then he left.  Great.  So now I'm an emotional basket case, and I've been left alone in a quiet hallway!!  I need to give credit to the staff at the hospital though; many of them passed me while I was waiting to be taken to the OR and each one asked me if I needed a warm blanket, and made sure that I was OK...because I was fighting the hysterics that were trying to take over me!!

The anesthesiologist came to talk to me about how I react to anesthesia.  They should know to NEVER ask an epilepsy patient about something we don't experience each day without another adult around; we can't remember ANYTHING!  I told him that I don't have any problems with anesthesia because I couldn't ever remember having trouble with it.  Apparently that's not true.  The two of us don't get along well at all.  My mom has always been able to tell the anesthesiologist this information for me, which is why I don't ever remember having problems with it; I was always given countermeasures.

Right as I was being wheeled into the OR, I saw, through the complete blurred vision I was now experiencing, my neurologist.  Finally, a happy face I recognized.  She grabbed my hand and I didn't let go. The last thing I remember saying as I was helped onto the operating table was to make sure the doctor didn't shave my head!!  This first surgery was for the depth electrodes to be placed onto my brain.  These would give more detailed information to the doctors when I had seizures later during my stay.  They would use this information to learn where it would be most beneficial to put the RNS on my brain.


This is what the right side of my head looked like after this first surgery.  Two men came into my room later and hooked up the cords, then wrapped up my head.  Just a little bit of my hair was shaved, really only my right side burn, so I was okay with that.

Recovery from my first surgery was HORRIBLE.  Because no countermeasures had been taken, I was very sick from the anesthesia, and I was in a ton of pain.  This is when I feel bad for my mom.  I don't remember much about that recovery, but she remembers all of it!  I know that my head hurt A LOT, and that I was extremely nauseous.  We didn't know that the doctor would be cutting far enough down on my right side that a muscle near my jaw would have to be cut.  I could talk, but I could hardly open my mouth to eat.  And if I was able to eat, it could only be soft stuff that I could chew on the left side of my mouth! Once my head was completely wrapped up, there was NO MOVING my head to the right AT ALL. A good 10 pounds was added to my head, so trying to get comfortable was a priority, but a lost cause. I've experienced a lot of pain through the years because of my epilepsy, but this was a level of discomfort I'd never felt...and hope to NEVER feel again!  The cords to the leads were in a place where I couldn't lay back, so my neck and shoulders were in constant pain.  My mom was awesome and became my personal massage therapist, providing me with just a few minutes of relief here and there. Not knowing my bad reaction to anesthesia really came back to bite me, as I couldn't hold back the nauseous feeling any longer.  Have you ever tried to throw up in bed WITHOUT moving your head? Sounds like a stupid question, but this was the situation I found myself in.  I couldn't move my head unless someone moved it for me, and even then it was done with an INCREDIBLE amount of pain!  I was allowed to have Morphine every two hours through my IV.  I was in my ICU room by 3pm or so.  It took about 6 rounds of Morphine to FINALLY get my pain level under control. I began to worry if it would ever stop hurting.  Eventually I fell asleep.

Wednesday, July 6th, 2016

The waiting game started today.  Now that the electrodes were in place, I was now given only half of my seizure medications because we NEEDED me to have them.  I needed to have seizures until the neurologist and neurosurgeon agreed that they had enough information to implant the RNS device.  We had no idea how long this would take, so we settled in for the long haul.  I was originally told I could be there until the following Tuesday...which  made me want to cry.  My sister saw this board at the front of my room and laughed because under the "goals for today" section it says, "have a seizure", which is the opposite of what we want to have happen!!  I couldn't see anything at all.  There was no way my contact lenses were going in, and since the surgery took place so close to my ear, my glasses weren't going on my face any time soon. That was probably the most annoying issue I faced.  Pain comes and goes, but when you can't see ANYTHING, it makes life very difficult.

I had a camera on me 24/7 to record the seizures.  The cameras were being watched by people on the 14th floor. I'd wave at the camera just to give the poor souls having to watch me something to smile about.  By 9:30AM, I had two seizures. During the first one, my neurologist and her two residents were in the room. My mom had to tell my neurologist that I was having a seizure because it was so subtle.

All three of them ran over to the computer screen and confirmed that I was definitely having one. I had my second one shortly after, and then I was given Ativan to stop me from having another seizure. It really was a wild ride. First I'm taken off half my meds, then I'm given medication to prevent another seizure! I WISH I knew how to read this screen.  I know that it's showing my brain waves, but how cool is this?!?

I slept a lot of Wednesday.  I was still in A LOT of pain, and I was more disoriented than usual after the two seizures I'd had.  They ask you questions like "what year is it?", and stuff like that so they can gauge where you are mentally.  I couldn't answer the questions. I had my head covering re-wrapped a good 3 or 4 times that day, because it just wouldn't hold together.  It kept slipping off.  That was loads of fun...really, it was. Through the pain I did all I could to remember that this was all worth it; the pain was temporary, but the benefits were worth it.  I still couldn't move my head on my own, I couldn't lay my head back, and I was now practically blind, so every time someone would come into the room, they'd have to come to the left side of my bed so that I could see them!

My neurosurgeon came in that afternoon and told us that they had the information needed to put in the implant, and asked if I was ready to have the RNS surgery Thursday...which was the next day!  We were stunned that they had enough information.  It was either do it Thursday, or wait until the next Tuesday when my neurosurgeon came back to town.  PLEASE, DO IT THURSDAY! Once again the hospital was able to pull together the team of people that was needed to make this operation a success, and everything fell into place.  The NeuroPace Rep who lives in San Francisco was able to catch a flight out to Utah that evening so that he could be there. We knew that my surgery wouldn't happen until after my neurosurgeon's clinic hours were over the next day, but that was okay.

I hadn't been able to eat much more than crackers, broth, and juice.  I was supposed to stop eating by midnight on Wednesday now that I was having surgery Thursday.  However, since my surgery wasn't going to happen until late Thursday, my nurse, Blake, made sure I could eat breakfast so that I wasn't starving all day long.

Thursday, July 7th, 2016

We'd been hearing stories about other patient's going through the same surgeries I was having done, and how they'd been stuck in the ICU for WEEKS waiting for a seizure to come.  It was so hard for me to believe that.  All they had to do with me was decrease my dose by half and less than 24 hours later I'd given them 2 seizures!  One guy was there for 26 DAYS before having a seizure, which makes me wonder why in the name of the world was that guy having this surgery when it took him 26 DAYS to have a seizure under all that stress, and decreased medication?!?

My sister came to visit that morning, which is always a great thing, because she knows how to keep me laughing.  We spent the day just doing what we could to pass the time.  The NeuroPace Rep came that afternoon to show me the computer that I will use to transfer the information from my RNS device to the main data server.  This information will help train the device how to recognize when I'm about to have a seizure and stop it.  It's much more technically complicated than that, but my brain just can't explain it right now! I thought it was really stupid that the Rep came to talk to me when I knew there was NO WAY I was going to remember ANYTHING about what he told me!  I was glad my mom was there, because I was right!

After my sister left, mom and I watched Friends all afternoon and into the evening.  Mom reminded me to tell the anesthesiologist to use countermeasures this time, so that I wouldn't be miserable.  I was also aware that I needed to joke about stitches being used this time, not staples like the first surgery!

Around 5pm a lady came and unhooked all the cords that were attached to my brain.  That was a great moment because my head felt so much lighter!!  They came for me around 7pm.  Since I'd just had brain surgery less than 48 hours ago, this was a piece of cake!  There were no emotional crying sessions.  Instead, I went in smiling and laughing.  I found the anesthesiologist, told him the misery I'd gone through during the first surgery, and he told me they'd use every trick to make sure that didn't happen again.  I saw the neurosurgeon on the way in and joked with him that stitches should be used this time!  He joked right back with me, which I needed to hear.  I was less worried, but it was still brain surgery!!

I remember hearing my mom while I was recovering back in my ICU room.  One of the first questions I asked her was if I still had my hair...yes, yes I did.  The countermeasures proved successful because I felt really good.  I was still in pain, but I wasn't nauseous and I felt better than I had in days!

The operation was a success.  Through a partial craniotomy, which makes it impossible for me to feel the implant, I now have four screws, and this inside my head:

This is what my head looked like after the 2nd surgery.  It's almost a perfect 'S' shape.

Friday, July 8th, 2016

You're always told to rest when you're in the hospital.  When you're in the ICU it's very difficult to rest. Forget the fact that the bed was so uncomfortable, that I had to have people pull me back up towards the top at least once a day. There are people coming into your room many different times during the hour, and the moment you press the call button, they are there to help you...which is a good thing.  Friday became the day where I was hopefully going to be transferred out of the ICU.  This was a good thing because it meant I was one step closer to going home!

Later that afternoon I was transferred to a bed on the 14th floor.  It was the most comfortable bed I'd been in during the past 4 days!  I didn't slide down it, and I was able to do more for myself.  You'd be surprised how annoying it gets when you have to rely on others to help you do simple things like brush your teeth, use the restroom, etc.  The room had places for family to sit, and there was a view that Brandon enjoyed quite a bit.

As the nurses in my new room became more familiar with my story, the stigma that often follows epilepsy patients became clear.  The nurses began telling me that I would need seizure pads put onto my bed. Seriously?  I've just spent 4 days in the ICU, having seizures during 2 of them, and NO ONE mentioned seizure pads to any of us.  If the ICU did't think it was necessary, why do you think I need them?  I informed the ladies that I don't flail around when I have seizures, and that my seizures are more me "zoning out" instead of Grand Mal's, but they continued to persist.  Seizure pads make an already small bed even worse.  Not to mention, they are humiliating.  A few minutes later when the sweet assistant brought the pads in, I said they weren't going onto my bed.  She verified that I was denying the use, and I said "yes"!  I realize they have to cover themselves, but it was just another smack into reality.  People hear the word 'seizure' and 9 times out of 10 their mind has an image of someone on the ground, foaming at the mouth, unable to control their body while it shakes.  It's part of the discrimination I've come to live with through out the years.  I just didn't expect to be hit with it at a hospital, where I figured the nurses would've been taught about epilepsy at some point during their training.  I suppose I could be wrong.

For the first time in 4 days, I slept well.  People weren't constantly coming into my room, and since the staff is spread much more thin on the regular floors, it took a while for a nurse to get to you when you did need their help.  There was actually a note on the wall stating that their goal is to get to you within 5 to 10 minutes of your call.  I thought that was a sad way.

Saturday, July 9th, 2016

I was told that as soon as the doctor made his rounds, I would know if I was being discharged or not.  He FINALLY came by around 10:00am...I was going home!!  Around 1pm I was finally home and my mom came over to help me wash out the pounds of betadine that were still in my hair.  Needless to say it wasn't easy, and there's plenty of betadine left. There's no scrubbing your hair when it's lined with stitches!  Even blowing it dry was a task.  But when it was done, I looked almost normal, and you couldn't even see the stitches!!


Sunday, July 10th - Tuesday, July 12th, 2016

Each day it's a little easier.  I have to remember that I just had 2 significant brain surgeries less than 48 hours apart, 5 days ago.  Yesterday I did too much as Nick and I washed my hair again. I found myself extremely nauseous and being forced to deal with all that fun again.  I'm learning to listen to my body more, and letting that dictate just how much I do. Today is the first day that I've been able to stay sitting upright on the couch, without needing to sleep every 20 minutes.  This is also the first day I haven't dealt with being dizzy.  I can't sleep on the right side of my head yet, brushing my hair takes a slow hand, and I have no idea how long it will take for me to once again have clean, betadine-free hair.  I'll have my stitches removed next Monday, which will hopefully make dealing with my hair easier, and in the next 2 weeks my RNS will be turned on. Until then, I continue transferring data each night, and swiping the magnet I've been given over the device when I have a seizure so that it learns more and more about how to prevent my seizures.

I need to give a shout out to the staff at Intermountain Medical Center in Murray, Utah.  Everyone I encountered was so polite, doing all they could to make me as comfortable as possible.  The ICU nurses were amazing, and I'll be sending a letter to the CEO of the hospital telling him all about them.  I was able to get their names before I left.

I realize how lucky I am to have access to the doctor's I've been blessed with.  This will be a long road to recovery, but once again, it will be worth it when the end game is no longer having seizures, and maybe even make it back to the 6 years I was seizure free.

I love my family and friends so much.  Friends jumped in offering their assistance with Brandon while Nick was at work during the day.  I couldn't have made it through this without Nick and my mom.  My family is incredible, and my mom continues to be my fiercest advocate, even after almost 20 years of dealing with this.

While I was in the hospital, my sister, Katie, posted this on Facebook.  I was touched by it then, and I continue to be touched by it now.  I don't mean to toot my own horn, but I'm told by many that regarding my seizure disorder, I'm one of the most patient, optimistic people they've ever known.  I share this with you because I am proud of myself for being kind; for realizing that seizures don't play fair, and that those in the medical field are doing all they can to help.

"I just need to take a minute to send a shout out to my big sister.

Meet Wendy. She has a huge smile, right? She's one of the nicest people on the planet. She is a school teacher, manicurist extraordinaire, Star Wars enthusiast, mother of one, and wife of one (who could handle more than one husband, when one of them is Nick😉).
Wendy had her first seizure when she was hundreds of miles from home in college. And ever since, she has struggled to have a normal life. We take so many things for granted; driving, holding down a job and not worrying about health problems being a cause for discrimination in finding and keeping work, being able to get from point A to point B without worrying about wandering off and getting lost because our brain decided to check out on us.
Through all of Wendy's struggles, she always has that same smile on her face. She always takes care of those around her. She's raising a little boy who is probably going to grow up and solve some previously unsolvable world problem, cuz he's a friggin genius.
Wendy just went through two extremely difficult surgeries, where sharp things invaded her head, and electronic devices were placed inside of it. Yes, she is now bionic and has permanent holes in her head 😀 (This will, of course, be the source of many future family jokes, I'm sure. I'm equally sure that she will laugh at all of these jokes.) Huge incisions, excruciating pain, and having to face the unknown. Through it all, she remains optimistic, kind, strong, and hopeful.
And I just had to take a minute and brag to all of my friends about her. Cuz she's amazing.
So here's to my big sister. I hope that modern technology in the hands of brilliant doctors will bring you a brighter future than you could have imagined! Love you, Sis!"

I plan to keep you all updated on my condition, as I am anxious and excited to see what happens.  Please feel free to share my story, and if you know of anyone who may benefit from it, leave me a comment so that I can contact them.  Epilepsy patients have so many obstacles in our way; if I can help ease another's burden, it would be my pleasure.

Friday, July 1, 2016

NeuroPace RNS Surgery: Half of My Life

I began having seizures when I was 19.  I turn 38 this October.  I realized a few days ago that I have been dealing with epilepsy for half of my life.  19 years ago when I had my first Grand Mal seizure in the cafeteria of BYU-Idaho, I had no idea that so many years later it would continue to control my life.

If you're unaware of my epilepsy history, you can read here to get caught up.  From this article there are many links to past blog posts regarding my story.  (There are also many other fun blog posts from when I did this MUCH more frequently!)

About a year ago, I was meeting with my neurologist when she told me about a new procedure called RNS (responsive neurostimulation).  It's very difficult to understand, so here's a video describing the procedure.

My initial reaction to this was "OVER MY DEAD BODY".  The LAST thing I wanted to subject myself to, was actual brain surgery.  The RNS is very similar to the VNS device that I currently have.  Sure, I've had the VNS surgeries, but this is way more than making a small cut into my chest.  RNS surgery is opening up my entire head!  That was all I had wanted to hear about this procedure and the subject was dropped.

I had my VNS device replaced in November, 2013.  Since that time, my seizures have continued, and even increased.  The VNS device, and many medications I've taken, are proving to no longer work.  The time had come to find something else that would help restore me to a "normal" life.  Our attention focused once again on the RNS surgery.  We received more information from my doctor, and were told that the results from this procedure were changing lives, for the better.  There was a DRASTIC decrease in the amount of seizures these patients were having, and our thoughts were that if those who were having hundreds of seizures a month were now only have 20 - 30 each month, then it should work wonders for me.  On average, I have between 10 - 15 each month.  We decided to begin doing the required tests that would determine if I was even a candidate for this surgery.

An MRI I had in December showed us that my seizures were changing.  Instead of coming from the same side of my brain that they've been coming from for the past 19 years due to the malformation inside my brain, they are now coming from many different places.  We had no idea that seizures could do this, so we were caught off guard, and a little startled by this.  For the past year my seizures had begun changing.  Usually if I had a seizure, it would be the only one I'd have that day.  Now when I have one, it's almost a guarantee that I'll have at least 2 more during the same day.  The last seizure I had took me nearly 30 minutes to completely recover from.  The tests showed that I was a candidate for the surgery.

We met with the neurosurgeon in March to get as much information as possible, and to get answers to many questions:

1- What is the next step?
A procedure called Depth Electrode Placement would need to be done.  I would be admitted into the ICU and have surgery where 10 - 15 electrodes would be placed on different parts of my actual brain and make a map showing where my seizures are coming from, so that the doctor could know exactly where the RNS needs to be implanted.  This means there would be holes drilled into my skull so the electrodes could go onto my brain.

2- How long does the procedure last?
I will be taken off all my seizure medication, stuck in a hospital bed, unable to leave it for ANYTHING; no shower, walking around to stretch, getting up to use the restroom; NOTHING until the doctor has seen 3 or 4 seizures that will provide them with the information they need to more accurately place the RNS.  So basically, we have no idea how long I'll be stuck in that bed, unable to get up.  They make you stay in bed because they are also video taping me so they can see my seizures. More often than not, a patient will have seizures while they're not in the bed...defeating the entire purpose of the person being there!  Realizing that every hour spent in the ICU will cost THOUSANDS of dollars, the hope is that once I'm taken off my medication I will begin having seizures very quickly!

Based off of pictures on Google, I believe this is what the depth electrode placement portion of the surgery will look like.  This picture also helps me understand why I won't be allowed to get up.  It looks like it wouldn't be very easy!!

2- Will I loose my hair?
The doctor says that since I have long, thick hair I won't have to have my head shaved.  He believes that I should be able to comb my hair over the holes that he says are very tiny.  I am more skeptical about this. There are only so many ways you can do a "comb over" before it simply becomes ridiculous; so we'll see. When I first heard this, I wanted to die.  Who wants to loose all their hair?

This is a picture from Google when I searched RNS surgery.  There were many like this and it's why I believe it's very possible that I might loose my hair.  I've grown used to the idea and have decided that if I do loose my hair, I'll buy the coverings that chemotherapy patients wear.

My neurosurgeon told us that all the patients he's done this on have had no issues having the surgery approved by their respective insurance companies, and I was put on the schedule for July 5th.  They wouldn't go for approval until a month before, so it became a waiting game.

After calling the insurance company each week in June (I'm a squeaky wheel!), the decision came out last Friday (which was also my wedding anniversary) that the insurance company had DENIED my surgery. After spending MONTHS mentally preparing for this, having friends put in place to watch Brandon while I was in the hospital, and having Nick request work off, it was over...just like that.  Doing EVERYTHING I could not to obviously cry on the phone, I asked what my options were now.  I could write a letter appealing the decision and request a peer to peer meeting where my neurosurgeon would specifically talk to a doctor from my insurance company and plead my case.  Why this isn't done to begin with is beyond me!  Three different time slots were allotted for the peer to peer meeting, and I was told it could take MONTHS for a final decision to be made.  I spent the next hour in uncontrollable tears.  Not only was I not able to have the surgery during the summer, which meant not missing work, and making the process much easier for my family and I, but I might not even have it done at all!

Not willing to give up, and with my mom's help reminding me about all the issues I've had over the years (because my memory has been GREATLY effected by all of my seizures ) I wrote and faxed this letter to the appeals department 2 hours after the decision came out last Friday.

My name is Wendy Toale. A decision came out today to deny the multiple procedures my neurosurgeon has asked for because “deep brain stimulation is medically unproven to be helpful”, which is the quote I was given regarding the denial as read to me by a United Healthcare worker. Do you realize that deep brain stimulation is needed before a Responsive Neurostimulator (RNS) can be properly, SAFELY installed into the brain?

I have suffered from epilepsy for almost 20 years and it has COMPLETELY taken over my life. I’m almost 38 years old and have no independence. Where I work dictates where we live since I rely on others for everything I have to do in my life. Epilepsy has taken away my livelihood. I spent thousands of dollars to obtain my teaching credential, but no one will hire me to teach in a classroom alone. I am now a teacher’s aide making less than half of my potential, without medical insurance, vacation pay, and not even earning money towards retirement; all things that people find crucial to their survival in life. 

Discrimination is a constant for me. I live each day in fear, wondering when the next seizure will happen, and where I’ll be when it does. It is humiliating. I can’t sing, or perform on the piano in public anymore because I never know when a seizure is going to hit. My son has had to watch his mother have seizures. I am supposed to be his protector. Instead, he’s ended up having to grow up much more quickly, and has in many ways become my protector. I'm also unable to safely have any more children due to the harmful side effects of all the medication that I'm on.  

I’ve had seizures where I walk away from people in the middle of conversations with them. They don’t understand why I walked away, and it makes me look like a horribly rude person. Search parties have been sent out to look for me on a number of occasions because I’ve gone walking off during a seizure.  Every time I have a seizure, brain cells die.  I suffer from debilitating migraines, and we’ve discovered that my seizures are now coming from different parts of my brain, which is very disturbing.

I have been on many different medications that have all failed. I’ve had a Vagus Nerve Stimulator implanted. For 6 incredible years it worked, making me seizure free, and then the lead broke, which RARELY happens. Since the replacement of that lead, the device is no longer working the way it used to. My seizures continue to increase not only in frequency, but also the length that they last. Years ago they would last only a few seconds. Now they can go a good 5 minutes. And I have no idea what has happened during that time. I rely on others to tell me what happened while I was having a seizure.

I need, I DESERVE the best FDA approved procedure there is to restore my life to as normal as possible.  I have studied and read everything I can get my hands on regarding this procedure and my neurologist, neurosurgeon, and I agree that I am a perfect candidate. When the idea of the procedure was first presented to me a year ago, it was the scariest thing I’d ever heard of. Brain surgery isn’t something that people jump to have done. It took me months and months to decide that this was the best shot to help me lead a normal life. There are still many unknowns regarding this entire process. I am still scared. But I know with all my heart that this is the best thing for me, and you can’t take this away from me. This is the best chance for the normal life that I haven’t had in almost 20 years.

RNS has been put through clinical trials. The data now shows that with every year, even within months, seizures become less and less. Patients who would suffer from hundreds of seizures each month are now only having 20 or 30 each month. Isn’t that INCREDIBLE? Patients are getting their driver’s license back, they are regaining their independence. Insurance companies everywhere have been approving this procedure. Why would they do this if RNS hasn’t been proven to work? 

How much worse do I need to get before you will consider the newest and best treatment available?  There is no rhyme or reason to my seizures. I had the Vagus Nerve Stimulator implanted because I used to have auras...I could detect when a seizure was coming and use the device to stop them. I can’t detect them in advance anymore to prevent them from happening. This is why the RNS would be so beneficial for me. The device would detect, and stop the seizures for me. Short of continuing down the road of constantly changing medications that are expensive and have horrible side effects, I don’t know what to do. If Cannabis had been approved in Utah I would be going down that road. It is helping so many people decrease the number of seizures they have. Unfortunately I don’t have the finances to relocate to Colorado, where it is legal to use Cannabis.

I hope that this letter, that my story will help you to see how imperative this procedure is for my health; both mental and physical. It will not only improve my quality of life in amazing ways, but it will also improve the lives of my family members who help me deal with this on a daily basis.

This is the best way I can describe what my last 19 years have been like.  It once again became a waiting game.  I cancelled all the help I needed for Brandon, our family made camping plans, and life moved on.

Just this morning, I called the neurosurgeon's office to find out if the peer to peer meeting had happened yesterday as scheduled.  The meeting was hopefully going to happen this afternoon.  3 hours later I received a phone call from the neurosurgeon's nurse:  my insurance company had approved my surgery, and they still want to do the surgery on the 5th...4 days from today!  The doctor's nurse said that she'd be working like crazy this afternoon making sure that everyone who would be involved with the surgery is still available, and that I would be hearing from her by the end of the day.  Once again, it became a waiting game.  Only this time, I knew the surgery would happen...I just didn't know when.

Well, turns out the blessings are in my favor today.  I will be having the surgery done this Tuesday.  I have no idea how long I'll be in the hospital.  I know it will be the most BORING, and difficult stay ever since I can't leave the bed for any reason at all, so I'll be bringing books to read, and thankfully they have WiFi; so Netflix will once again become my best friend!

I'm VERY nervous, and I have A LOT of planning to do before Tuesday morning at 5:15AM when they want me to check in!  Like I said, I'll have WiFi access, so I'll do my best to update everyone about what's happening as the week goes by.  We know this is the right course for me to take.  There are still A LOT of unknowns, so I will GLADLY take all the prayers in the world!

Here goes nothing...