Sometimes, life throws you curve balls that completely change your plans. And sometimes those curve balls result in emergency brain surgery and nine days in the hospital.
I have a VP shunt to treat idiopathic intracranial hypertension.
On Thursday, November 29th, my VP shunt failed. My husband and I were at the movie theater, watching Crimes Against Grindelwald when I realized the shunt reservoir was sunken in where it was supposed to be puffed out. I had been having some worsening neurological symptoms for the previous few days and had even spoken to my doctor’s office the day before. But we had come to the conclusion that it was all just a result of being sick with a cold. Now, if you know me and my obsession for all things Harry Potter, you know we finished the movie. After the movie, I called my doctor’s office to advise me what I should do. I wasn’t able to reach anyone, but did leave a message. It was late in the afternoon though, so I wasn’t sure that I’d hear back that same day and I knew this was an issue that needed to be addressed. I knew the shunt being sunken in was a bad thing, but I wasn’t sure how bad. I decided to call the nurse advice line through my insurance, who advised me to go to the ER. I REALLY didn’t want to go to the ER, so I called the my doctor’s after hours line and had them page him. My doctor called me back and I explained to him what was going on. I told him that I was mostly calling him to have him tell me I didn’t need to go to the ER, but I was starting to feel like he wasn’t going in that direction. He told me, “stop f***ing around and get your ass to the ER now.” So, reluctantly, I made arrangements for the kids and had my husband get me to the ER.
We were supposed to be leaving on vacation to Orlando the following day, so I was in a bit of a panic thinking that everything we had planned and paid for would go out the window.
When we got to the ER, I was whisked back to a room immediately. When the doctor came in, he was a nice enough person, but I’m pretty sure he’d never seen a VP shunt before. I explained what my symptoms had been and the issue with the shunt reservoir. He briefly felt my head and asked, “so this isn’t what it’s supposed to feel like?” Umm…no, it’s not.
They did a CT scan and X-rays. Eventually did blood work as well. The doctor said that he was consulting with the on call neurosurgeon, but that he couldn’t get there to see me until the morning, so I was going to be admitted. I was in pain and nauseous and scared. My husband sat by my side, holding my hand until they got me admitted, but then he had to get home to relieve our babysitter and get the kids up and ready for school.
Later that morning, I got to see the neurosurgeon. He assessed my shunt and told me that it needed to be fixed ASAP. But it was a Friday and he couldn’t do the surgery that day, so the surgery was scheduled for Monday…which meant that I was looking forward to a painful, lonely weekend spent in the hospital. To help ease some of the pain and pressure through the weekend, the neurosurgeon performed a lumbar puncture. He removed about 30ml of CSF and hoped that, that would hold me over until Monday. To be honest, I’m not sure that the added pain and discomfort of the lumbar puncture were worth the little relief it gave me.
At this same time, we had had a vacation planned for months. We were supposed to be leaving that day. We had my dream vacation planned and it wasn’t just the immediate family. We were going on vacation with my mom and sister and her family as well. We were going to Universal Studios Orlando. Most importantly, I was finally going to get to go to the Wizarding World. My husband and I agreed that he would take the kids and go to Orlando as we had planned while I stayed in the hospital and had surgery and hopefully I’d be home before the family got back from vacation. As much as I hated the thought of being alone and scared in the hospital while my family was enjoying my ideal vacation, I knew it was important for the kids to go and make once in a lifetime memories with their aunt, uncle, cousin, and grandma.
So I stayed at the hospital while my family was off enjoying my dream vacation. I had a few great friends stop by and visit me. I had great nurses. I reminded myself, “this too shall pass.” It may pass like a kidney stone, but it’ll pass.
When we finally made it to Monday, the neurosurgeon told me I was his second surgery of the morning. And because I was having surgery, I wasn’t allowed to eat anything. The hours passed, hungrily, through the day. It wasn’t until after lunch-time that I was told that my surgery had been pushed back to 5:30pm. Monday was one of the worst days. It was hard to spend the majority of that day hungry, anxious, in pain, and alone. Thankfully, I had a friend who was able to come visit in the afternoon.
I wasn’t actually taken back for pre-op until around 6:30pm and then wasn’t taken to the or until around 8:00pm. I think it was around 12:30 when I woke back up. I woke up ok excruciating pain. I don’t really even know how to describe it. It was like I could feel each individual stitch. Once I was able to form actual words, I was able to tell them that I couldn’t hear out of my right ear (the incision was on the right side of my head). I don’t remember what all happened. Everyone was moving and everything was just buzzing around me. My ear felt muffled; it sounded like when you’re wearing ear plugs. Ultimately, they decided that the hearing loss was caused by blood and betadine settling and building up in the ear canal during surgery. It took about 5 days before my hearing was almost completely back. It’s still muffled from time to time, but it comes and goes.
My friend who had been visiting with me that afternoon, had stayed at the hospital while I was in surgery. I don’t even remember what time it was, when they finally let her back to my room in the Neuro ICU. But I do remember that she sat by my bedside all night. The pain was pretty intense all through the night/morning. I would fall asleep for a few hours at a time and each time I woke up, I would be in tears from the pain. Clearly, she couldn’t replace my husband, but it was nice to not have to be alone during this time. I’m incredibly thankful for the three days she spent cooped up in the hospital with me.
Sometime after surgery, I realized that the entire right half of my head had been shaved. In the grand scheme of life, I know a functioning brain is more important than hair, but my heart sunk when I realized how much of my hair had been shaved. My first brain surgery, the doctor shaved such a small section, I was able to cover it just by the way I parted my hair. This time, I would end up with a completely bald head. I just wasn’t mentally prepared for it.
I felt a lot of emotions those first couple of days. Between the pain meds, the pain, and the sleep deprivation, there were a lot of tears shed. I had a couple of great nurses who really helped make it all somewhat bearable. Tuesday night, I used a bag of wipes to clean the betadine and blood out of my hair and braided back my remaining hair. I’ve never had much talent for braiding hair, so I was pretty impressed with myself. LOL.
On Tuesday, the neurologist who originally told me to go to the ER, stopped in for a visit. He wasn’t actually involved in my care there, so it was nice that he visited, even though he didn’t have to.
Originally, it was expected that I’d only spend 24-48 hours in the hospital after surgery. But each day, the pain wasn’t improving. The worst of the pain was (and still is) in the base of my skull and neck. My head feels like bobble head, it hurts to just try and hold my own head up. I had this feeling before surgery, but I’m pretty sure the “bobble head” feeling actually got worse after surgery.
My family came back from their Orlando vacation that Friday afternoon. And they brought my mom home with them. There really hadn’t been much improvement all week, so I was still in the hospital. And because I was in the ICU still, my kids weren’t allowed to visit. My husband came to visit on Friday. We had hoped that I’d be going home on Saturday. Saturday rolled around and the doctors didn’t show up. My mom and husband came up to visit around 4:30pm on Saturday evening and then around 5:00pm the neurosurgeon finally came through. He asked me what I wanted and I told him that I’d rather be miserable in my own bed.
So we got packed up and headed home.
I wasn’t able to sleep in my bed that night because I couldn’t lay flat. But my recliner was still more comfortable than the hospital.
Once I got home, I knew we’d have to go ahead and shave the rest of my head. The remaining half of my hair was still in the brain, so I cut the braid off before I had my husband start shaving it.
I didn’t think I’d cry as much, about shaving my head, as I did. But as I cried, while my husband shaved my head, he decided to shave his also.
I didn’t think it was possible to love him even more. I was wrong.
Going through this whole ordeal without him by my side, was probably the hardest part of all of it. The pain and nausea and anxiety were all tough. But being in the hospital and going through such urgent surgery without him there, was the worst.
I’ve made it through and I’m on the other side. Now it’s time to try and get back to life as “normal”…whatever that looks like.