Madeline's Concussion Story Part 1

Concussion Story

January 22, 2015

The online concussion community can be pretty remarkable! As part of our concussion education efforts here at #HeadOn, we were fortunate to connect with Jay, Founder of The Knockout Project, who recently shared his concussion story with us. Through Jay, we were able to connect with Jami Uretzsky and her daughter, Madeline. A freshman in college, Madeline has become a prominent voice in the concussion education community. After suffering her second concussion in five months playing soccer, she still suffers from Post-Concussion Syndrome, but still finds time to speak publicly about the effects of head injuries in sports. (In addition to being a college student!) Read Part 1 of Madeline’s inspiring concussion story here:

Tell us a little bit about yourself

I am a 19-year-old college student from North Reading, MA. I see myself as a very positive, outgoing, and hardworking person. In high school, I played soccer, ice hockey, and ran two seasons of track. I have been playing sports my entire life and I love to watch them, especially football and hockey. I graduated in the top 5% of my high school class at Bishop Fenwick in Peabody, MA. I am currently a freshman at Simmons College majoring in neuroscience and minoring in nutrition.

What has been your experience with concussions? 

My first concussion was in May of 2011. I was getting into a car and stood up too fast and hit the top of my head on the roof of the car. Initially, the top of my head bled a little, and I had a headache for four days. I was diagnosed by my pediatrician the next day, and was kept out of track practice for two weeks. I felt fine after four days though, had no other symptoms, and never thought about it again until my second concussion in October of 2011. I was running down the field in my high school soccer game when I was tripped from behind, fell on my forehead, snapped my neck back, and fell on my forehead again. I was evaluated by the school trainer on the field and kept out of the game. My mother then took me to the emergency room after my game and I was told that I probably had a concussion, and to see my pediatrician to be diagnosed. Four days later, I was diagnosed by my pediatrician, with almost all 5’s and 6’s on the symptom chart that rated over twenty symptoms on a scale of 0-6. So, I have had two formally diagnosed concussions, but I was a gymnast until I was eleven so I probably fell on my head a few times during that period of my life as well.

Did you immediately know something was wrong? How did you react?

For both diagnosed concussions, I instantly knew something was wrong because the initial impact on my head was extremely painful, with a headache immediately following. I had no experience with concussions prior to my first one, so I did not have much of a reaction other than crying in pain after I hit my head on the car. However, after my second one, I got up and tried to continue playing, but I became disoriented and shortly after, took a knee to stop the game. At that point, I was disappointed because I knew that I would not be able to play for a while, and that I would have to go to the doctor. However, I did not know how much pain I would be in—i.e. my symptoms other than a headache—because that is all I ever knew from my first one, nor how long it would be until I would return to playing. I had no idea I would have to be out of school because I assumed I would go the next day. 

What symptoms did you experience and how long did they last?

As mentioned above, my first concussion consisted of a headache for four days. The symptoms that followed my second (and still current) concussion were much more drastic. The first day, I had a headache, neck pain, disorientation, sensitivity to light and noise, and trouble following a conversation. However, the intensity of these symptoms did not appear until the second day. I had trouble walking, concentrating, balancing, sitting up, standing still, memory problems, ringing in my ears, fatigue, nausea, and the symptoms that I had on the first day too. As the months went on, my personality also became flat and I was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and POTS (Postural Orthostatic Tachycardia Syndrome). I was unable to say the days of the week or the months of the year in order for over four months, I could not walk in a straight line, stay awake, or put my thoughts together cohesively. My cognitive symptoms lasted for at least 1.5 years while my balance, coordination, and headaches started improving around eight months after the initial impact. Today, although better than before, I still have headaches, sensitivity to light, neck pain, ADHD, and POTS.

How were you treated for each concussion?

For my first concussion, I was told by my pediatrician to stay out of track practice for two weeks. After my second, I learned that each symptom had to be treated differently and that there were so many more. Initially, I was evaluated at the ER and then at my pediatrician. I then saw a neurotrauma rehab specialist who told me to keep a journal each day, and explained what accommodations I would need at school when I was able to return. I returned to school after being bedridden for around three months, and only was at school for two hours every morning. I did no work, and was tutored the following summer at home five days a week to make up the year. A month after the impact, I saw a neurosurgeon who prescribed complete brain rest, meaning I could not look at a screen of any kind, talk on the phone, go to school, do any homework, exercise, draw, or use my brain in any way. I saw a massage therapist who did acupressure, an herbalist, five different chiropractors who all specialized in different techniques, a speech therapist, two different physical therapists, and a neuropsychiatrist. I was given at-home exercises to work on by the speech therapist, and three different chiropractic neurologists. These exercises were to help with eye tracking, concentration, forming thoughts, balance, coordination, and my headaches. Additionally, two of these chiropractic (functional) neurologists put me on a nutrition plan, and are helping to treat my POTS. To this day, I still see my neurosurgeon and neuropsychiatrist every six months, and a chiropractic neurologist a few times a month.

What was recovery like? What helped and what hurt you during recovery?

Recovery has been extremely slow. Recovering from Post Concussion Syndrome is a work in progress. Everything cannot be fixed at once, or sometimes not at all. Maintaining a positive attitude has been important because it is easy to get down on yourself when things are not improving. It is difficult to understand, but realizing that you cannot rely on your brain, and that it does not work the way that it used to is upsetting. I have learned that having patience, working hard, being willing to try anything, and doing what the doctors say is important in the process. Because I could not use my phone or computer, it was difficult to socialize and keep in touch with friends. Luckily, I have an amazing mother who would keep me informed and talk with my friends. I would have people come visit, but I never remembered that they had visited, nor could I fully communicate with them because I could not follow a conversation. Every day since my second concussion, going on four years now, has been painful. I always have a headache, I have to wear sunglasses every time I go outside, I cannot stand or sit still at all, and I cannot exercise. I have just accepted what has happened, not complained, and learned to live a life of constant pain. After all, everyone has something that they have to deal with, no matter how small. 

Two of the most helpful things for me have been keeping a journal of my progress, especially in the beginning, and connecting with other teenagers with PCS on social media. When I did not have much of a memory, it was nice to look back at my journal pages and see what I did that day, or who came to visit. It can be a lonely time, and it is always nice to have someone to talk to that is going through the same experience, even if you never meet them face-to-face. I have definitely lost some friends since sustaining my injury. People that I thought I was close to were unwilling to accept what happened, and did not understand that I could not go out or text them whenever they wanted. It hurt to lose them at first, but I have made new ones, especially through the PCS world online. It has also been difficult to not be active. I loved working out every day, and I miss being part of a team, but that is also something that I have learned to accept. I have focused more of my efforts on school and concussion awareness rather than sports.

The Knockout Project site refers to your passion for concussion education. What do you think is lacking in terms of education efforts right now? What do you wish all athletes (and coaches & parents of athletes) knew about head injuries?

After seeing so many different types of practitioners, I think that an awareness of what treatment options are available is lacking. There is only so much that an actual doctor can do, and taking drugs is not always the answer. What has helped me the most has been functional and chiropractic neurology. They develop a plan that is specific to my needs and closely track my progress. They are the ones who have helped my headaches, neck pain, POTS, and light sensitivity the most. The exercises that they have given me have helped to shrink my pupils to more of a normal size in a matter of eight months. My willingness to try different types of treatments has been the key to my recovery because not everything has worked, and not one thing works for every symptom. My next adventure will be to an acupuncturist!

Head injuries are extremely serious no matter how minute someone might think they are. I believe that sports are one of the greatest parts of society, especially for kids and teenagers. I’ve made so many friends and have learned valuable lessons through sports. However, head injuries can ruin people’s lives. Athletes need to be smart about how they play, when they feel that they are hurt, and to listen to their bodies. Coaches need to recognize when there might be a head injured player, and to not push them to shake it off or get back into the game. Parents need to be there for their injured child, and accept that their life will be different. Thankfully, I have a great support system at home, and parents who have been able to take care of me and take me to appointments. I have seen parents push their children to fight through the pain, or think that they are faking the injury. Having a good support system helps a patient to stay positive and recover. I would never wish this injury upon anyone, and although concussions are not 100% preventable due to the fact that they can be acquired doing anything, I hope that by spreading awareness, people who do sustain them will understand that taking care of themselves, and taking the injury seriously, is crucial. 

 

Stay tuned for Part 2 next week!