Tag Archives: Vestibular

Long Island HS Junior Speaks About Loss, and Perseverance in the Wake of PCS

By Kate Gaglias

kategThe saying “You will never know the value of a moment until it becomes a memory” is absolutely true. Many of us athletes take our sports for granted- The grueling practices, running laps for no reason, constant games and tournaments. But the truth is no matter how much we say we hate it we will always have the love for the sport. Until, unfortunately for some of us all of that can be taken away in an instant.

My name is Kate Gaglias, and I am a junior in High school in Long Island, New York. I’ve played soccer since I was four years old, beginning in an in-house league like every other toddler. I joined a travel team when I was eight called the Longwood Twisters (which I am still a part of today) and played on the junior high team, JV team, and in my sophomore year I became a member of our varsity team. But since a young age my life has been changed by concussions. I received my first concussion in 2007 by getting a ball slammed to the side of my head by one of my teammates at an indoor practice. I didn’t feel anything until I got home, and after telling my dad (an athletic trainer) and my mom (a physical therapist assistant), they checked out my symptoms (the normal dizziness, sensitivity to light, headaches) and they all added up to having a mild concussion. I was out of school for a week, and when my symptoms were gone I returned to school like a normal 5th grader. Continue reading

Multiple Concussion Sufferer From PA Details Her Experiences

{ Editor’s note: Isabella’s experience highlights the most common (and nerve-wracking) bullet point that many of us have learned as multiple concussion sufferers: That it takes virtually no effort at all to re-injure yourself once you get the ball rolling with concussions. We know that the effects of concussions are cumulative and that each one increases the likelihood of the next one- even from a slight bump. Living under that sort of cloud day to day is stressful and very difficult; especially, as you are working hard to recover from current symptoms.   – Jay }

By Isabella Cantafio

isabellaI never knew what a concussion was until I got my first one in a soccer game in 6th grade. I headed the ball in the air with another player and fell back whipping my head off the ground. I remember feeling in a blur and sat out for about 5 minutes before returning into play. By the end of the game my head felt like someone was hitting it with a hammer and I was on a merry go round ride. My next concussion came in 8th grade from hitting my head off the gymnasium floor leaving me unconscious for 2 minutes and sending me to the hospital.

Nearing the end of my freshman year, I was in a water park accident that caused a concussion and forced me to end my 9th grade year early.

A few weeks after the accident (never being officially cleared by IMPACT test) I was playing soccer with some friends and got kicked in the head causing another concussion.

Over the summer until the start of my sophomore year I had intermittent headaches, got easily dizzy and overall didn’t feel right. I didn’t think it was from the concussion but when school started I found it hard to concentrate, my grades started slipping and the headaches just got worse.

Two months into the school year, I passed out, hitting my head and was unconscious for almost a half an hour spending 3 days in the hospital under observation for seizure activity. After the accident, I had double/ blurry vision for several months, fainting spells, problems in school, and severe migraines that seemed to never leave.

Doing vision and vestibular therapy for 5 months things started to improve until fooling around with some friends I got pushed back jarring my head causing many of my symptoms to come roaring back.

I was forced to end my sophomore year early bed bound for 5 months unable to watch tv, text or do anything that would stimulate my brain. It was horrible to say the least.

Playing basketball my junior year I got hit in the head causing another concussion.

A few months after that, I got a knee to the head and blacked out for several seconds. Not much force was needed to knock me out at this point. The summer leading to my senior year I had moderate improvements in my post-concussion symptoms and was really looking forward to senior year and looking into college.

Just when everything started improving, things spiraled downward quickly, and I got back to back concussions, 2 weeks apart. The latter of the two was a car accident that caused a neck injury and more concussion problems. I’ve been in and out of the hospital trying to get the migraines under control, doing more vision and vestibular therapy and cognitive exercises to help with short term memory problems and concentration issues, sleeping problems and mood swings.

The one thing out of my experience I have learned is to never take anything for granted. You may think you are “invincible” and you can play through any pain. But with concussions it is your brain, something you can’t replace, you need to take care of it.

No game is worth years or possibly a lifetime of problems. I can never play sports again, I still have many problems from my injuries and my college plans are on hold for now. But sometimes in life the road that everyone else is taking, isn’t the road you are supposed to be on.

Take every day one day at a time and never give up!

 

“Healing Heads”- Massachusetts HS Junior on Her Concussion Journey

{ Editor’s Note: At the ripe old age of 17, Madeline Uretsky has become a prominent voice in concussion education. She was the subject of a Boston Globe feature story on concussion in January of 2013. Her story has also been highlighted by the Brain Injury Association of Massachusetts, The Salem (MA) News, and a number of concussion-centric websites and blogs. She has spoken publicly on concussion, most recently at the Boston Acquired Brain Injury Support (BABIS) Walk. Madeline is truly a concussion education warrior after our own hearts, and she is an important voice. – Jay}

“Healing Heads”

mad1My name is Madeline Uretsky, and I am a junior at Bishop Fenwick High School in Peabody, MA. What used to be known as “getting your bell rung”, and being told to just “shake it off”, are no longer accepted ways of dealing with concussions.  Thanks to modern research, we know now that concussions are in fact, brain injuries, and must be dealt with as such. They are to be taken seriously, regardless of the severity, because the short term and long term effects can be devastating. Ignoring the symptoms and the mistreatment of them can have lasting effects to the brain, as we have learned from the many NFL players now suffering from the many concussions they sustained, but ignored, while playing. Any subsequent hit to the head before the prior concussion has healed can have profound effects on the brain as I have learned. I am just one of the many thousands of people who have suffered a severe concussion, and whose life has been forever changed by it. You never think it’s going to happen to you.

On October 11, 2011, while playing in my soccer game, I was tripped from behind while sprinting for the ball, fell on my forehead, snapped my neck back, and fell and hit my forehead again in the same place in a matter of seconds. I knew something was wrong immediately, but I had no idea how serious it would be. My symptoms did not become apparent until about 48 hours later. I could not sit up, tolerate any light at all, I was tired, and had an excruciating headache. It has now been a year and seven months since the moment of impact.

I spent the first 3 months of my concussion lying in bed at home, in a dark room, and on complete brain rest. This brain rest meant that I could not watch TV, use a computer, phone, draw, text, read anything, or do any sort of homework or exercise. In other words, I could just sleep, lie in bed, and not go to school.

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At this time, my symptoms were numerous and very high on the symptoms scale at the doctor. I had severe headaches as well as up to 165 very sharp pains all over my head every day. I also had severe whiplash, disorientation, memory loss, extreme fatigue, dizziness, balance problems, trouble following a conversation, ringing in my ears, and I could not tolerate any bright colors, light, or noise of any kind. My sleep at night was erratic and filled with nightmares. You would never know this by just looking at someone with a concussion because they do not have a cast like a broken bone. The brain is still injured but on the outside you look fine.

I went to my pediatrician weekly, and my neurosurgeon monthly, for a symptom evaluation. On a scale of 0-6, I had all 5’s and 6’s during those three months of brain rest; I could not believe how awful I felt. I started going weekly to a massage therapist who practices a type of acupressure that helps brain injured patients. I liked going because it was a way to relax myself, even though it was painful. I continue to go on an as needed basis, and also do many other kinds of alternative therapies that have been helpful such as chiropractic, herbs, speech therapy, balance therapy, eye coordination exercises, and others.

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As these weeks turned into months, it became apparent that there was no end in sight for me. I was isolated from my friends and my school, yet I felt so awful that I accepted that there was just nothing I could do about it, except rest, and wait it out. I had visitors, on a limited basis, but I did not even feel well enough to enjoy myself. I was unable to engage in any kind of conversation, and I would randomly fall asleep. There were times that I could not even remember that I had visitors.

I missed all but five weeks of my sophomore year and I am still not cleared for physical activity other than walking. I did catch up with my schoolwork over the summer of 2012, and now I am on a full schedule at school but with accommodations such as extended time on tests. I took my SAT test without accommodations and that was a challenge. I did some extra preparations to help myself concentrate and have the energy to last the entire test. Overall, it went well and I always wonder how I would have felt during the test if I had not had a concussion. Recently, I also had a setback that kept me out of school for a week after a re-injury to my neck from a visit to the physical therapist. What makes my concussion so severe is that I still have all of my symptoms over a year and a half later, just to a lesser degree. In addition, I have learning disabilities now that I had never had before. Focusing, processing new information, multi-tasking, and comprehending orally are some of them. I am doing much better than I was, but I still have a ways to go. I am hoping to one-day wake up symptom-free.

When you sustain a serious brain injury, your life, and the lives of those around you, are greatly impacted. What you once knew as “normal” no longer exists, things that you could count on for yourself no longer exist, and what you have to do to achieve, and accept, a “new normal”, is a difficult process, both emotionally and physically. I could no longer do any form of physical activity at all, yet I was accustomed to playing sports every day of my life. Before my concussion, I was a very involved and active student – my freshman year, I played soccer, hockey, and winter and spring track.

I decided early on in my recovery that I was going to do whatever the doctors told me, and I was definitely NOT going to let this concussion get the best of me. It’s not who I was before my injury, so I wasn’t going to allow myself to become that person. I was open to any kind of treatment that could help me. As I started to feel a bit better, I began taking baby steps to regain my life. I started to use my computer to reach out to others, as well as to learn more about my brain injury.

Along the way, I decided that there must be other teenagers out there suffering as I was, and who perhaps don’t have the kind of support that I have, so that became my mission – to help them. Life as a teenager is difficult enough, so just imagine being a teenager with up to 165 headaches per day, living in a constant state of fogginess, having memory loss, unable to carry on a conversation without physical pain, sensitivity to light and noise, and generally not being able to live the life I once had.

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Speaking at the Boston Acquired Brain Injury Support Group Walk in Jamaica Plain, October 2012

Returning to school as a student with a brain injury is a very scary proposition. Will people look at me funny? Will they ask me a lot of questions? Will they think I’m faking? – after all, I look fine. These were the many questions that I had before I returned.

My school was so supportive with my accommodations that I decided to write a chapter for a book about concussions in sports, and I have been a regular blogger about various brain injury topics, for several websites. I was the speaker at the 10th annual Brain Injury Walk in Boston in October, and the Pediatric Brain Injury Conference in November. I was featured in Bay State Parenting magazine, the Salem Evening News, and the Boston Globe as well. I will continue my crusade for concussion awareness, because I feel that this has happened to me for a reason, and that is my mission to help others.

As long and difficult as my road to recovery has been, it has also been extremely rewarding. I have been able to mentor, counsel and befriend many other kids with concussions, and this has made me feel so much better. The most important advice I can give is to stay positive because things improve over time. Brain injuries are a work in progress, there may not be a change on a daily basis, but improvement will be seen. Just because life is different than it used to be, it doesn’t mean it isn’t as great – you just have to find a way to make it as great, even if you have to do it differently.

 

Sara Birkholz, on Post Concussion Syndrome, From the Trenches

imagesaraThe past several months I have picked up and read books about personal accounts of survival. The authors have amazed me with their strength and their new outlook on life once they have emerged from whatever dark tunnel or trial was placed in their life. As I finished reading each story, however, I could not help but wonder what their story would look like if they had written it in the midst of their battle. I have struggled to write this article because I do not yet have the insight of seeing the light at the end of the tunnel. I do not know how my “crisis” so to speak, will turn out. I decided in a way this is a good thing because the purpose of The Knockout Project is to educate people on what the ramifications of a concussion can be. Stepping into the life of someone who is currently living day in and day out with the consequences of a concussion can shed a lot of light on why it is so important to protect ourselves and those we love from being injured.

First I would like to start with the definition of concussion. A concussion is a traumatic brain injury that alters the way your brain functions. In the past when I heard someone had suffered from a concussion, I did not think much of it. My first reaction was NEVER “Bobby received a traumatic brain injury today during football practice.” Instead I thought, “whew, Bobby had his bell rung a bit at football practice and should be fine.” I am sure that is the way the majority of people feel about concussions. I thought this way about concussions until last August.

On August 7, 2012, our family decided to end a fun three day trip to Duluth, MN by going on the new Alpine Coaster at Spirit Mountain. After all, it was on the way out of town and the kids were pretty pumped about riding it. I hopped on the sled like contraption with my daughter. As we left the boarding station the employee told us “go as fast as you can, the sled is attached to the tracks and you cannot be thrown off.” Of course once my 10 year old heard that great news, we were full steam ahead. As I saw the first turn approaching I felt like we were going much too fast and leaned forward to grab the brake. I was too late, and because I had not leaned into the turn and was in an awkward position, I got whipped to the right. I actually felt my head snap and was dazed the rest of the way down the mountain. At the bottom I told my husband and kids that I did not feel well and that I was jarred on the first turn. We all just laughed and talked about mom being a wimp and getting too old to go on rides.

Within 48 hours from my ride down the mountain, I started having dizzy spells.

Within 72 hours I ended up in the emergency room because I could not stop throwing up. I did not even initially associate my symptoms with anything that had happened at Spirit Mountain. I thought to have a concussion, you had to be knocked out. Many tests were ordered to figure out what was going on with me and why I was suddenly having a “neurological event” (that is what the doctors described it as on those first few days). Eventually, I was sent home with the “good” news that my CT and MRI were both clear.

It was not until about 10 days after the accident, and continued nausea, vomiting and dizziness, that I called the neurologist to tell him about the Alpine Coaster ride. He confirmed that I did not need to be knocked unconscious to have a concussion and that I was indeed having concussion symptoms. He told me to continue as I was and all my symptoms should clear on their own within 6 weeks.

Fast forward to today, February 26th, 2013. I am almost 7 months post accident, and as I sit and type this article I am wearing sunglasses because the back light from the computer screen is excruciating for me. I have not had one moment since August without nausea, dizziness, light sensitivity, and disequilibrium. Up until Christmas, I was still vomiting almost daily. Even bending over to get laundry out of the dryer makes me feel like I am spinning so much I have to rush to a toilet. Every time I am in the car and we go from moving to a stop I have a wave of nausea come over me that is so severe that I have to prepare and have bags in the car. Entering into a big box store, like Target, makes me feel even more off balance and dizzy. I try to wear a baseball cap and sunglasses into stores but even that does not take away the increased nausea and disequilibrium that the fluorescent lighting causes. From the moment my feet hit the floor and my eyes open this is my current “normal”.

Before this accident I was an avid runner, taught spinning classes at the local gym, practiced law part time, helped coach my kids in various sports, spent tons of time with my girlfriends and family and absolutely loved and embraced every day. Today I struggle to even get through a day. I have prayed to die over and over because my physical symptoms are so horrendous. I cry myself to sleep many nights because I know in the morning I am facing another day like this. I feel awful 100% of the day. I have severe nausea 100% of the day. I am dizzy from the moment I stand up. I feel off balance 100% of the day. Grabbing milk and juice quick from a grocery store is excruciating with all the lights and stimulation.

People do not understand what it is like to live this way. I have gotten everything from “what is your problem, you just have a concussion” to “certainly you can’t still be having symptoms?!” But the worst was recently when I retrieved my file from the clinic and the doctor had written “hypochondriac” and “health anxiety” as his conclusions to my problems. ARE YOU KIDDING ME??!! I could not make up these symptoms if I tried. And frankly, I would be living my life to the fullest not spending time at a clinic. That is all I want and pray for…..my old life back. It is a very scary moment when you are still sick and miserable every second of the day and the doctor who was in charge of “helping” you does not even understand concussions and doesn’t even believe you.

I am now seeing a new set of doctors in Minneapolis, MN who truly understand post concussion syndrome. Every time I leave their offices, I feel even more educated about brain injuries. In two short visits, they have gotten to the bottom of the dizziness and nausea. Apparently, my whole ocular system was knocked out of whack in the accident and each eye is focusing on a different objects and sending different messages to my brain. The scary part is about 50% of the brain is devoted to visual processing. So, I know I am still facing a long road to recovery with my therapists. I am also undergoing vestibular therapy to get my balance back. I never realized that one small, or what I thought was small, whiplash event could damage so many centers in my brain.

Finally, living with PCS is a very lonely journey. I have learned that as your symptoms persist, everyone moves on with their lives. Every once in awhile they throw you a “how are you?” Sometimes I tell people things are a little bit better only because I do not want to go through the process of trying to describe my symptoms. Sometimes I tell them I am little bit better because I wish so badly they were getting a little bit better. But the honest answer is “I am the same.” I have not seen any recovery in over half a year. PCS is a time when you really learn who your friends and loved ones are, and you learn that health, above anything else, is a true blessing you took for granted every day.

As you can see, when you are in the midst of a dark tunnel the story is not exactly inspiring but it is real! This is a very frank look at my current life with post concussion syndrome. In addition, you get to see how absolutely devastating a head injury can be. I do not have a history of concussions. This is my story after just one concussion event. All it takes is one event to have lingering, debilitating post concussion symptoms. I want people to realize that risking your brain to go back into a game is not a good decision. Riding a bike or going skiing without a helmet should be unthinkable. I could go on, but ultimately I want to educate others as much as possible, because even though I was in a freak accident, other people have the chance to step away from a sport or event before more damage is done. Also, I want to emphasize how important it is to find the right doctors and therapists if you are having lingering symptoms from a head injury. Trust your gut. The doctors are working for you and this is your brain not a cut that needs stitches.

I know in the end, God never gives us a challenge we cannot handle. With the help of my husband and two wonderful kids, current doctors and therapists, and the love of all my other PCS pals, I know this has to get better and I can continue to persevere. I plan to continue to update all of you on my progress in therapy and hope I can help anyone who is currently going through this. I hope someday I can write again with the insight of recovering from this monster. People with head injuries have an invisible injury. We look healthy on the outside, but deal with very real, disabling, miserable side affects every day. Concussions are not something to take lightly. As Sir Francis Bacon said, “Knowledge is power.” And now you know.