‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation

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“Growing up, I wanted to be involved in everything. From playing sports to singing at church, I wanted to be in the middle of it all. I wanted to be included. I wanted to feel like I was a part of something. I wanted to be the best. When I would get excited, stressed out, or upset about anything I would feel so lightheaded and dizzy. I thought it was normal.

December 2013

It wasn’t until my freshman year in high school that I knew something was very wrong. I was playing basketball. I loved being part of a team. I just felt like I couldn’t keep up with everyone else. We would run, I would literally feel like the room was spinning. I thought I was making excuses for myself. I thought I was being lazy. I’ve always wanted to be the best. No matter what it was, I wanted to be great. But, something changed that month.

January 2014

I remember my vision and hearing declining. I would stand up and feel like the earth was shaking. My teachers were getting concerned. I stood up one morning in first period, and it felt like a train hit me. I grabbed the side of the desk and slowly made it to the floor. To say ‘I was embarrassed’ is an understatement. I’m an overachiever. Everyone was staring at me. Mrs. Mann had me call my mom from the front office. I remember barely being able to hold myself up and thinking, ‘Really Jen? Pull it together.’ I felt like I was making it up. ‘I’m making it up. It’s in my head. It has to be. Nothing is wrong with me. I’m just doing it for attention.’ I would say these things to myself. I really believed it.

February 2014

My amazing mom, she knew something wasn’t right. I remember trying to go to school almost every day and always having to call her because I truly couldn’t handle it. She drove me to all my doctor appointments. Believe me when I say there were so many. My primary care doctor, Dr. Kristen Stevens, had been taking care of me since I was 6 years old and was a family friend. She sent me to a cardiologist, an ENT, an allergy specialist, and a rheumatologist. I saw everyone. No one had answers. All I heard was, ‘I think you’re depressed.’ Well yeah, I was depressed. I was sick. I felt like someone had filled my head with cement. Every day felt like a dream. It was like a fog had entered my life and I couldn’t see right in front of me. I couldn’t form complete sentences. I wanted to do all these things. My body wouldn’t let me. My friends didn’t understand. So many people didn’t believe me. They thought I was making it all up. I didn’t understand. My prayers felt so empty. ‘God, I just want to serve you. I just want to be happy and healthy. What did I do wrong? Why do I feel this way?’

March 2014

I’ll be honest. Really honest. At this point, I had given up. I convinced myself that I was out of my mind. ‘Maybe I need to be put in a mental hospital?’ We had seen all the doctors, but one: the neurologist. It’s strange how well I remember that day. He examined me. Then said, ‘I’ll just be honest with you. Nothing appears to be wrong with you.’ ‘Great, here comes the depression speech,’ I thought to myself but sat quietly. He continued, ‘I don’t see anything that is really concerning. However, something must be going on for you to feel this way. I want to do an MRI of your brain and spine just to make sure.’ Great. Awesome. More tests. I have been a positive person my whole life, but I was done. My hope was nonexistent.

March 21, 2014

I was exhausted. I was angry. I was full of bitterness at the world. It was MRI day. Mom drove me to the imaging center. I remember walking into the room. They had me change into a gown. It was cold. I felt so empty. I had never had an MRI before, so I didn’t know what to expect. But I did know one thing. They were NOT going to find anything. I laid across a large table, and they gave me an IV. I laid in that machine and lost track of time. I remember tears running down my face because I felt like my life was over at 15. When they finished, the tech pulled up the images on the computer. He looked at me and said, ‘You’re going to need a neurosurgeon.’ Okay. Hold on. What? I need a WHAT?

Courtesy of Jennifer Schwickerath

April 2014

They scheduled me with an appointment in Oklahoma City at OU Children’s Hospital. We live in Tulsa and at the time, there weren’t any pediatric neurosurgeons in town, so we drove about 2 hours to my appointment. My dad, mom, and sister all came with me. We pulled up to the hospital and it wasn’t like anything I had ever seen before. Colors everywhere. Kids laughing. It didn’t even look like a hospital to me. It looked like a safe haven. We sat in the car for a second and prayed that the Lord would give us guidance to know if this was the neurosurgeon that I needed

We walked in. They put us in a room. My dad and mom were being kind of quiet, while my younger sister, Jara, was trying to distract me and keep my mind off things. There was a knock on the door. ‘Come in,’ we all said. This small, petite lady with dark hair walked in. I looked at my parents and sister, as peace filled the room. She introduced herself as my neurosurgeon and shook all of our hands. Then she started explaining what was happening. Answers. I was finally getting answers.

She diagnosed me with a rare chronic brain condition, Type 1 Chiari Malformation. My skull was too small for my brain. My brain was pushing into my spine, which was causing my fatigue, vision and hearing problems, and dizziness. My spine was filling up with fluid (syringomyelia or syrinx), which can cause paralysis, weakness, stiffness in the back, shoulders, and extremities. This was a lot to take in. She said I needed a brain surgery called a Decompression, as soon as possible. She would go into the back of my head, remove two inches of my skull, and my first vertebrae to give my brain more room. She also said that this was a chronic issue. There is no cure, only the surgery to help the symptoms.

I was relieved. Yes, you read that right. Relieved. I wasn’t crazy. I wasn’t insane. I wasn’t making anything up. It was real. I wasn’t being lazy or trying to get attention. I was sick. There was a problem. Now, she said she could hopefully fix it. She had performed this surgery over a thousand times. She was the best. My surgery was scheduled for May 7, 2014.

May 2014

I thought I was going to die. I’m not being dramatic when I say that. I don’t say it lightly. I was 15 years old. I googled my condition. I read a lot of really scary stories about the surgery. I thought I was going to die. I wrote letters to all my close family and friends in case something did happen to me. I begged my parents to take me on a short trip to Branson, Missouri, (which is only about four hours from Tulsa) a few days before the surgery. They agreed. Even though I felt like complete crap, I tried my best to enjoy myself. I kept thinking, ‘This could be it. This could be the last fun thing I do.’ Death wasn’t the only thing on my mind. Losing the ability to walk, going deaf or blind, and being in a wheelchair for the rest of my life were all possibilities.

May 7, 2014

I was surprisingly feeling pretty good that day. All my family came up for surgery. Aunts, uncles, cousins, grandparents, and my church family. I had quite the support system. I was making jokes all morning. I’m pretty sure it was denial for what was about to happen. I hugged everyone. Then they started moving me to the operating room.

Courtesy of Jennifer Schwickerath
Courtesy of Jennifer Schwickerath

I remember silently praying, ‘Lord, if there’s something you still want me to do on this earth, let me make it through this. If not, I just want to be with you in heaven.’ Next thing I knew, I was waking up in the ICU. I was in and out of consciousness. My head felt like someone had taken a sledgehammer to it. The next day, they moved me to a normal room. My neurosurgeon came in to talk to us. She said that there was so much damage done to my spine, she was shocked I wasn’t already paralyzed. She said, ‘If we would’ve waited two more weeks for the surgery, you would have been paralyzed from the neck down.’

I was in the hospital for a week. What a week it was. My face was so swollen. My whole body felt like I had been in a fighting match. I couldn’t do anything on my own. I couldn’t even shower by myself, nurses had to help me. It was a hit to my pride for sure. I’ve always been very independent. After several days, they wanted me to start walking. I would walk a few steps holding on to the wheelchair, then when I got tired, my mom would push me. We were walking around the floor and the elevator opened. A young boy, probably around five years old, came out in a wheelchair. His face was glued in so many places. It looked like he had been in a bad wreck, and it destroyed his face. He waved at me. I smiled. He went on. I sat there. Tears filling my eyes. I felt this peace come over me. I looked at my mom and said, ‘This is why. Mom, I’m going to go into the medical field and help kids.’ It was a whirlwind of emotions. Who was I to be ungrateful? God had given me a second chance. An opportunity to make a difference.

The next few months were full of recovery. I had ups and downs. I had a lot of sleep and medications. Life started to get back to a whole new normal. In October of 2014, they did another MRI of my brain and spine to check on the fluid build-up. The fluid was almost completely gone.

Courtesy of Jennifer Schwickerath

March 2014 vs. October 2014

I thought that was the end of it. I thought the surgery would fix everything. The rest of my high school days were not what I expected. I was diagnosed with Fibromyalgia. My whole body hurt. It was like pins and needles. My muscles ached. Then I was diagnosed with Postural Orthostatic Tachycardia Syndrome (aka POTS). When I would stand up, my heart rate would go through the roof and my blood pressure would bottom out. Honestly, I was just exhausted. Everyone said the surgery was over. I should be ‘fine.’ I was in and out of the hospital for years. Yes, years. I had so much anxiety. I was an emotional wreck. Those 3 years are such a blur to me.

During all of this madness, I continued to work very hard in my classes. I was the vice president of the National Honor Society. My grades were almost perfect. I was attending Tulsa Technology Center during my junior and senior years. I followed through on what I told my mom that day in the hospital. I graduated as a Nationally Certified Medical Assistant and Phlebotomist. I found a new love for sports in volleyball. It wasn’t as hard on my body as basketball was. I really enjoyed it.

Courtesy of Jennifer Schwickerath
Courtesy of Jennifer Schwickerath

Graduation Day 2017

I was relieved that school was ending. I felt so behind in everything. My grades were great. My social life, not so much. I had a hard time staying connected to people when I was barely at school. Everyone had their opinions about what was going on with me. Everyone was going to college. I was done with school. I had my certifications.

Courtesy of Jennifer Schwickerath

2018

I worked in a pediatric office for awhile. I love kids. I really wanted to do more. I worked at the hospital for about 6 months. It was so hard on my body and not only that but my mind. I was exhausted. Working 12-hour shifts isn’t all that it’s cracked up to be. I couldn’t keep up with it all. I started praying that God would give me something else. I needed to feel like I was making a difference without killing myself.

2019

Now I am 20 years old. I work for an incredible company called Arbonne. I travel, make my own hours, and work on my schedule. I have this amazing team of men and women who have my back no matter what. I finally have the friendships and relationships I’ve always wanted. My goal is to do medical missions overseas. I want to help provide medical supplies to families in need. My sister and I recently opened up an online boutique. We both have a passion for entrepreneurship.

Courtesy of Jennifer Schwickerath

As for my health, this is the first year in six years that I haven’t had one hospital visit. I’m not on ANY medications. Dealing with chronic illnesses isn’t always easy, but I’ve come such a long way. God has blessed me and given me so much.

Here’s the thing, if you’re dealing with something in your life and you feel like that it’s never going to end, let me encourage you. I’ve yet to see a storm that hasn’t ended. Don’t be hard on yourself. Give yourself grace. Allow people to say whatever they will. Their opinion of you isn’t your business. Stay focused on what’s in front of you. Take it a day at a time. God sees you. He knows. I will tell you this, I would go through it all again. It has made me strong. It has made me bold. It has made me who I am.”

Courtesy of Jennifer Schwickerath
Courtesy of Jennifer Schwickerath
Courtesy of Jennifer Schwickerath

This story was submitted to Love What Matters by Jennifer Schwickerath from Tulsa, Oklahoma. You can follow their journey on Instagram. You can also visit their boutique and blog.  Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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