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!!!
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 funny...in 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 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.
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.