When 20/20 Vision Isn’t Enough

As you are reading this, over 50% of the surface of your brain is being used to process the visual information coming in through your eyes. Each eye is constructed of over 2 million working parts and of those, the optic nerve contains between 770,000 to 1.7 million nerve fibers. Nearly 80% of sensory information coming into your body is the input to your eyes! We have more neurons dedicated to vision than our four other senses combined. Interestingly, if you receive conflicting information from your senses, your brain will use vision to over-ride the other sense almost every time (video showing this phenomenon at the end).

This recovery has led me to realize just how much I took for granted, especially my vision. How often do you stop and think, I am seeing this image perfectly in space because of the intricacies of the brain that created it? What happens behind the scenes is the subconscious system of the brain, allowing us to experience where we are at in space and our perception of the world around us. This information is a culmination of so many factors working together in the brain which then forms the 3D road map for us. The human body is amazing.

We see with our brains, not with our eyes.
Norman Doidge, MD

20/20 is looking at one visual function of the eyes, that being visual acuity. What about all of the other components that contribute to the visual system? The systems that make up our vision are so complex and involve various areas of the brain to produce the images and our perceptive abilities. After TBI, disruption and damage at different areas of the brain can occur. With so many areas of the brain contributing to our visual system, you can imagine if there is damage to any single part of the system, it can lead to visual dysfunction.

Following TBI, up to 90% of patients experience at least one oculomotor dysfunction (scanning and tracking) and up to 40% experience visual dysfunction (focusing and eye teaming) persisting beyond three months. Despite the prevalence, this is still often overlooked in patients.

I mentioned briefly in an earlier post that I had a quick referral to an optometrist for my visual deficits that became prominent immediately after the injury but continued to worsen as days and months passed. In the immediate days following my brain injury, I developed blurry and double vision. I couldn’t scroll on my phone or drive in the car without feeling dizzy and nauseous. I couldn’t track moving objects nor could I move my eyes without pain or move them quickly from one target to another without feeling off balance and experiencing double vision.

About two weeks following the injury I was seen by an optometrist who did two things on examination – checked my visual acuity and near point convergence (NPC). When your eyes come in to focus on a close target, that is called convergence (your eyes are converging). NPC is a measurement of the distance where maximum effort of convergence occurs, measured by a doctor moving a fixation stick from far to near and stopping when you no longer see one stick (it becomes double) or when one eye subtly deviates outward. The distance from the nose to that point is the NPC.

You can try this by holding a pen at arm’s length and slowly bringing it closer and closer to your nose. Wherever you start to see two pens or when one eye subtly deviates (if you have an observer), this is your NPC. This is commonly abnormal in patients following TBI. From these two tests, I was diagnosed with convergence insufficiency and accommodative insufficiency. I will explain these diagnoses later in this post. I was prescribed reading glasses (+ 0.50) to aid in focusing. The glasses had a tint to them to block blue light and help with light sensitivity.

I was advised to follow up again in one month to determine if I required vision therapy which we did end up starting one month later. Therapy occurred every two weeks consisting of a ten-minute appointment with the optometrist who observed me perform certain tasks. There was no objective data to show improvement and really no time to properly assess for improvement in a ten-minute appointment anyway.

My eyes continued to hurt, headaches persisted, blurry and double vision seemed to worsen. This carried on for 3-4 months with no notable progress at all. I thought that maybe there just wasn’t room for improvement of my eyes. We kept doing the same exercises over and over to no avail. It felt like I was banging my head against the wall over and over. It also felt like this therapy was a blanket approach – the same therapy used on every single concussion patient.

After stopping vision therapy, I traveled to Georgia where I stayed for one week and completed a brain rehabilitation program. That was the first time I had real, objective data of just how poorly my eyes were functioning. I’m going to explain this trip in detail in a later post. I returned from brain rehab with home exercises and felt better initially but as weeks went by, I could feel my body and eyes reversing back to the state I was in prior to the trip. I thought maybe I just needed more comprehensive care in person for my vision but I didn’t know where to look.

Like every other helpful treatment I’ve discovered, I was listening to a TBI podcast and one of the topics discussed was neuro-optometric rehabilitation. I wasn’t very familiar with this. The doctor in the podcast proceeded to talk about how important it is following a brain injury to find a provider who is specialized in neuro-optometric rehab and a great resource to find one is through the NORA (neuro-optometric rehabilitation association) database. A neuro-optometrist has special training in the neurological aspects of the visual system. The importance of a neuro-optometric examination as quickly as possible after brain injury was stressed.

This was in April of 2019, six months after my injury. I looked in the NORA database and found there was a center very close to home, The Vision Development Team. I looked into it – another treatment that would be solely out of pocket. Could this be worth a shot? I decided it was definitely worth it. Unfortunately, the optometrist I had been seeing for months prior had no experience in neuro-optometric rehabilitation. Vision therapy with that optometrist was solely focused on the eyes, and not how the eyes and brain were working together.

I called and scheduled the first available appointment at The Vision Development Team, about two months away. The appointment was scheduled for June 13, 2019. My hospitalization with the pneumothorax happened the day before this appointment. I cried because I was so upset that I would miss the appointment I had been waiting so long to go to. I begged to be released from the hospital temporarily to make the appointment (this was ridiculous). I was desperate to get my vision better and felt like waiting was wasting more time.

The Appointment at The Vision Development Team

My appointment included a thorough history of the injury and symptoms followed by a complex sensorimotor examination and neurovisual assessment. The exam didn’t just look at the eyes, it assessed how the eyes and systems of the brain work together. The best part other than giving me objective data showing my visual deficits was that they weren’t just addressing my eyes at this appointment – they were addressing all of the systems that construct me.

The exam started with the basic visual acuity test. Surprise, I have 20/20 vision. Oh, how I wish that meant everything were perfect. We then carried on to the more complex sensorimotor and neurovisual assessments.

This exam was comprehensive and included evaluation of oculomotor function, accommodation, binocular function, peripheral awareness, depth perception and spatial processing, visual-vestibular testing, balance and primitive reflex testing. In short, this is testing: how your eyes work together (eye teaming), your ability to track objects in space, your ability to sustain and shift focus, function of spatial processing (where things are at in space, our 3D road map), how the inner ear and balance system is functioning (vestibular system), if any primitive reflexes have re-emerged, and how the peripheral system is working.

The Results

I knew there was a lot wrong but what I discovered after all the testing was a lot to take in. I felt overwhelmed and defeated at first because so much was wrong but that turned into hope because we finally identified the target areas that needed to be rehabbed.

The eyes are supposed to work as a team. Just as other parts of the human body are not intended to operate independently of each other, the same applies to the eyes. It is necessary for the eyes to work in tandem and when this doesn’t happen as in my case, a multitude of issues surface. While each eye may individually be considered “healthy,” they are unhealthy in that they do not coordinate with each other and the communication system to the brain is impaired.

The exam showed I have binocular dysfunction or impaired eye teaming. I was diagnosed with convergence insufficiency (CI). This diagnosis means the eyes are not working together to focus on a target up close. Together, the eyes must turn inwards to view objects at near under normal circumstances. CI results when the eyes aren’t in sync and don’t move at the same time to focus on a target. This can result in the words appearing to move while reading as well as lead to blurred/double vision, impaired concentration, eyestrain, drowsiness, and headaches.

Another diagnosis is accommodative insufficiency (AI). AI involves the inability of the eyes to focus properly on an object and switching between looking at an object afar to an object near. An example of your eyes needing to accommodate is looking at the speedometer of your car and quickly looking out at a traffic light in the distance. If there is an insufficiency, when you make that quick movement of focus, there could be a lot of blurriness, double vision or motion intolerance.

I was found to have vestibular dysfunction. The visual system works very closely with the vestibular system of the inner ear that provides equilibrium and balance. When your head moves, your eyes need to adjust to the movement quickly in order to still be able to focus. Dysfunction in the two systems leads to motion intolerance, feeling off balance, dizzy and blurred/double vision.

Aside from the above issues, I had impaired peripheral awareness as well as impaired spatial processing seen with diminished hand eye coordination, depth perception and delayed reaction time.

A neurological phenomenon that I wasn’t aware of was present – suppression of one or both eyes alternating suppression. Most prevalent, however, is suppression of my left eye. This is a natural protective mechanism of the brain in an attempt to make sense of the visual information that is coming in. If you experience double vision, the brain adapts by disregarding or ignoring the visual signal provided by one eye or suppressing it. My eye suppression is a compensatory mechanism of my brain from prolonged periods of double vision.

For example, a healthy pair of eyes align and point towards the same object in space and see an equally clear image. The brain then uses small cues to determine the size, shape and depth of the object. The two images of each eye then combine to produce what you see in space. In a pair of eyes that have poor teaming, one eye may produce a blurry or double image so the brain struggles to combine the blurry image of one eye with the clear image from the other eye. The brain becomes confused and to compensate, it uses the good input from the healthy eye only and ignores the input from the blurry eye. This creates a strain on the muscles in the eye due to the overcompensation which can lead to headache, dizziness, nausea and unsteadiness.

Primitive reflex testing was also something I wasn’t familiar with prior to this appointment and the rehab that followed. Our primitive reflexes are automated responses to a stimulus, sensed by our neurons which then produce a response which is our involuntary action. We have many reflexes, some that are acquired throughout our lives and others that we are born with (innate, primitive). These primitive reflexes we exhibit as babies are a survival response and are integrated into our nervous system within the first year of life. As we hit each developmental milestone, a sense of safety is reached and different reflexes are inhibited by the developed higher brain areas.

Once the primitive reflexes are integrated into our nervous system or disappear, their purpose has been served and they are then stored. Brain injury threatens survival resulting in the reflexes that were once stored to be triggered to reappear. The brain reverts back to that primitive state. Re-integrating the reflex is important as it helps re-connect the sensory systems and regain normal visual functions.

The moro reflex in infancy is stimulated by any sudden movement of the neck. This results in the “startle response.” This survival instinct helps the baby cling to the mother. It is developed at about 28 weeks gestation and typically integrates and disappears around 4 months of age. If the moro reflex is activated in adult life it can lead to dysregulation of the autonomic system, hypersensitivity to external sensory stimuli, anxiety, visual perception and oculomotor dysfunction, and vestibular problems. Through testing, it was found that my moro reflex became active again due to the brain injury.

Neuro-optometric rehab was prescribed, which I continue to this day. A customized plan tailored to me was made – not a blanket approach used on every concussion patient. This is so important because no two concussions are the same.

Neuro-Optometric Rehab: A Work in Progress

It can be difficult for the brain to unlearn some of these behaviors but the good news is the brain exhibits neuroplasticity which means it has the ability to form new connections and heal. Did you know your hippocampus generates at least 700 new neurons a day? That’s pretty cool.

Neuro-optometric rehab focuses on plasticity by using prisms, filters, lenses and more to help stimulate various parts of the brain. This is unlike routine eye care or refractive care that can be fixed with glasses. The therapy I first received following my injury was focusing solely on the eyes and not how the eyes and brain worked together.

Walking into vision rehab often feels like walking into a jungle gym or a playground. Most appointments I am there in the big therapy room with little kids. Every rehab appointment feels like I’m channeling my inner child, which is what makes it so enjoyable.

Though painful at times, and I mean very painful, going to vision rehab can be a fun experience. My doctor works with the vision therapist to tailor a plan for me and adjust it through time as my progress is tracked. My vision therapist knows how competitive I am and incorporated many activities where you can set records. Not only was this motivating for me but it was a great way to track progress and see if I could beat my own scores each week.

We have done so many different vision exercises that I can’t possibly explain all of them here. My initial vision exercises were single eye exercises as I patched one eye. As I progressed, we slowly added in movements and eventually no patch.

To re-integrate the moro reflex we have done a lot of breathing techniques and relaxation exercises. This ties into the autonomic dysfunction that occurs following brain injury leading to a heightened and prolonged fight or flight state. The breathing techniques seemed a little silly at first and were sort of embarrassing with someone watching but it actually works. The breathing techniques used are called hisses and hums. Take a deep breath in, breathe out slowly and as you breathe out, you make a hum or hissing noise. This allows stimulation of the vagus nerve which in turn stimulates the parasympathetic nervous system (relaxation). We were able to reintegrate this reflex to the point where it was no longer present for about a year but unfortunately it re-surfaced after a recent traumatic day of testing.

Another helpful tool not only for the moro reflex but also easing the eyes after difficult rehab sessions is Syntonic phototherapy. When light travels through the eye it reaches the brain, specifically the hypothalamus and pineal gland. These areas are important for regulating various functions and studies have shown that by stimulating them with specific frequencies of light, it can have positive effects. I have done a lot of work with Upsilon Omega (a blue shade) that is supposed to help stimulate the parasympathetic system and restore balance of the autonomic nervous system.

To help with the vestibular system, we have done exercises with head movements which are still extremely challenging. As of late, we have had to put a hold on those more advanced exercises but hopefully I will progress to that point again soon.

Through time, we have also incorporated auditory processing through a program called the Integrated Listening System. I have done this while performing vision exercises to integrate the senses which has been a major area of disconnect. This is extremely challenging as I still have many issues in conversations with side noises, busy environments and becoming startled by unexpected noises and sounds. The intense tinnitus continues to be an issue.

It turns out that the glasses initially prescribed by the first optometrist I saw were not what I needed. After the neurovisual exam, I was prescribed prism glasses with binasal occlusion. Binasal occlusion is a partial covering of the visual field of both eyes to reduce the amount of visual stimuli that my brain has to process that is coming in. Prisms take into account how the brain and eyes are working together and can help stimulate those affected areas and improve vision, balance and spatial processing. Prisms are used for when the eyes aren’t working together to focus on a target which can lead to double vision. The prisms bend light that travels into the retina, allowing the eyes to remove the double vision and perceive it as one image.

Prisms have also been incorporated into rehab. We have worked on balance and spatial processing at vision rehab using various prisms as I have to balance and walk on a walking rail. It feels as if my body is being pulled to one side or the room is slanted. We have made some progress in that I am not constantly falling off of the rail. The goal is to help the eyes and brain to learn to work together again.

Vision rehab has been quite the journey, with many setbacks but also many small victories. It’s easy to feel defeated and stuck during the setbacks but I’m learning to feel all of my emotions and get it all out and then start focusing on how I’ll get out of it and move forward. While I still have a lot of progress to make, I am extremely grateful for the small victories made along the way. My biggest goals of vision rehab have not been achieved yet but I am keeping the faith and hope these goals will be reached and when that day happens, I will probably cry first and then celebrate by going for a drive while listening to good music. This is something I dream about!

Find a NORA Provider Here:

If you experience vision issues following a concussion and are told you’re fine because your vision is 20/20, find a different provider and find one that understands the neurological aspects of vision!

Find a NORA provider here.

To see my amazing group of people at The Vision Development Team, go here.

To All My Healthcare Provider Friends:

It’s important to note that visual dysfunction following brain trauma is due to damage in the brain at the axonal level. The visual dysfunction is not an eye issue – it is a global connection issue and disruption at various levels of the brain.

Despite the prevalence following TBI, vision problems are still frequently overlooked in the concussed patient. Always check near point convergence when evaluating concussion patients. This should be done at the first assessment. Failure to recognize this issue early on can lead to worsened and prolonged outcomes. This is a good predictor of outcomes including the development of post concussion syndrome.

Research suggests abnormal near point convergence contributes to many other post concussion symptoms as well as cognitive impairment. In this study, patients with convergence insufficiency performed worse on reaction time, processing speed, verbal memory as well as post concussion symptom scores as compared to the normal group. Early recognition is key to getting the patient the proper help they need with a neuro-optometrist. It is good to have a resource who deals with concussions and is trained in neuro-optometric rehabilitation. I would check the NORA database for providers near you so you have a good referral system ready.

The systems of the brain work so intricately and it’s important to recognize these problems early on. If you refer your patient for vestibular rehab and they have undiagnosed visual dysfunction, they will likely not progress or will initially progress and then plateau because it requires proper function of the visual system to be successful. Your patient may have auditory processing deficits which could also affect the visual system. This is why it’s important to look at all systems and have a comprehensive neurovisual assessment prior to starting other therapy modalities. The systems are so tightly connected so why are we constantly isolating them from each other and never putting them back together?

Lastly, medications will not solve the visual dysfunction. It seems we are always searching for the quick fix for our patients in the form of various pharmaceuticals which don’t address the underlying problem. Treating visual dysfunction requires time, repetition and rigorous exercises in vision rehab – something a pill will not touch. Remember, 20/20 isn’t enough and doesn’t reveal the whole story.

The McGurk Effect

As I mentioned earlier, if there is conflicting information from your senses, your brain will use vision to over-ride the other sense almost every time. The McGurk Effect is this perceptive illusion that occurs if there is a conflict between what you hear and what you see as someone moves their mouth and lips. I find it fascinating. It just shows you how important vision is in processing information. This video is really neat and shows you what this exact effect is.

Thanks for reading. Till next time earthlings!

Sources

Oculomotor Treatment in Traumatic Brain Injury Rehabilitation: A Randomized Controlled Pilot Trial, 2019, DOI: 10.5014%2Fajot.2020.026880
Vision Diagnoses Are Common After Concussion in Adolescents, 2015, DOI: 10.1177/0009922815594367
Vision Therapy for Post-Concussion Vision Disorders, 2016, DOI: OPX.0000000000000935
Vision Disturbances Following Traumatic Brain Injury, 2002, s11940-002-0027-z
Near Point of Convergence After a Sport-Related Concussion: Measurement Reliability and Relationship to Neurocognitive Impairment and Symptoms, 2015, DOI: 10.1177/0363546515606430
Organization of Visual Areas in Macaque and Human Cerebral Cortex, 2002
Task-dependent representations of stimulus and choice in mouse parietal cortex, 2018, DOI: 10.1038/s41467-018-05012-y
Study guide: brain injury rehabilitation, pain rehabilitation, 1998
Dynamics of hippocampal neurogenesis in adult humans, 2013, DOI: 10.1016/j.cell.2013.05.002

Dear Hockey,

I didn’t think this day would come so soon. I thought we had more time. Did we really have to end it this way? I thought this would be on my terms. But so many things in life aren’t on our own terms.

You were passed down to me from my siblings. I fell in love with you at the age of three, when I couldn’t possibly understand the concept of the game. Some of my earliest childhood memories are with you. You were with me as I grew up, carried me through my formative years all the way to college and after. You may have been my first love. I’ve been hurt by love before and didn’t expect it – the suddenness. I struggled getting through it then just as I’ve struggled with letting you go now.

We know of the impermanence of life but maybe we can’t fully grasp it until something we deeply love so much is gone in an instant. It happens time and time again, but it never gets easier. Maybe I expected you’d always be here which was foolish. Because nothing lasts forever. Everything comes to an end. I don’t think I could fully grasp your magnitude until you were gone.

I tried to avoid you for a long time but you’re everywhere, catching me off guard as you’ve ignited the years of memories that live deep inside to come alive and play before my eyes like a film reel. I thought of you today as I was cleaning my room. I found some old news articles, pictures and awards of some of the things we’ve accomplished together. They make me feel proud but also sad. The pictures feel so heavy and so loud. It comes rushing back – the feelings at that exact moment. How is it that I can hear the noise in the picture? I’d be lying if I said I haven’t thought about you every day since that awful day. You know the one, don’t you?

I see you all over. Why do you have to be…everywhere? You’re connected to the people in my life – in my friends who were once teammates, in my parents, in my siblings. I see you in big hits in sporting events. I can’t even watch them without thinking of you and what happened between us. My heart drops into my stomach. It makes me nauseous. I cringe as I hear the sound of the crunching helmets, the bodies slamming the boards, the sound of equipment on equipment as two players collide.

It’s strange how you are so intertwined in everything still. I think of you every time I put my old hockey sweats on. I think of you when the season starts to change and the fall mornings are brisk, reminding me the hockey season is about to begin. A song takes me to the locker room, singing with my teammates. Sometimes that song starts playing – the one I listened to in the car with my teammates before we arrived at the rink for our last game together. It’s like a time machine, taking me back to the moment when everything was still good. I’ve found myself longing for what once was. While your memory will fade, my surroundings will always connect me to you.

Some of my proudest moments involve you, and some of my favorite moments too. You gave me something to be proud of and taught me to be proud of myself. True happiness was skating with my teammates, my best friends, fighting for a common goal. What can replace the camaraderie of a team? Hours upon hours were dedicated to you. You’ve spanned all emotions with me. You helped me create a name for myself. You gave me confidence. You made me feel like a superhero for just a few hours.

You were there for me for 25 years. And then you weren’t.

Do you remember our moments together? Do you remember…

Mini hockey in the hotel hallways? When I was named captain of my all boys team? The locker room music – joking, laughing and dancing with teammates? The pre-game pep talks? The world-stopping goals? The hat tricks and playmakers? The emotion? Excruciating blocked shots? Team bonding in the hotel? That feeling the night before the first game of the season like the night before Christmas morning? Pre-game meals? Clinching the conference playoff championship game? Painful ice bath sessions? The soul crushing losses? The countless injuries? The tears of pain and tears of joy? Short-handed goals? Painful off-ice training? Advancing to the national championships year after year? The bus rides? Early childhood morning drives to games in full equipment? 5AM practices? All the awards? Team dinners? Post-game celebrations? Road trips? The pride in my parent’s eyes as they watched me play? The passion? Pre-game jitters? My siblings road tripping across the country to see me play? The big wins? The shivers traversing my entire body after a game winning goal? Crashing the ice with my whole team to celebrate?

I’ll remember. And I’ll never forget.

You allowed me to learn so much about myself, to grow in ways I couldn’t even understand until you were gone. What you taught me could never be taught elsewhere. You taught me courage, discipline, teamwork, connectedness. You were my guide. My escape. You taught me what it means to be an underdog, and to rise to the occasion.

You were there in the darkest moments and lightest moments. You gave me so many opportunities, allowed me to travel the world, to connect with people, and even led me to excellent education. You taught me to work hard for everything. You taught me that in order to be great, I need to give it everything I have.

You enhanced my life but also tore it apart. I almost wish I would have chosen to move forward with a different sport to play competitively instead. Maybe then I wouldn’t have suffered so many head injuries. I knew there were risks of playing but never this. I never believed you could have done this. There were moments I felt like I was drowning. Tears flowed and the thoughts drowned me. But the waves of tears couldn’t wash you away.

Couldn’t you have let me know that game was my last so I could have done things differently? So I could’ve held onto those moments harder? I would have taken it all in one last time and engraved it into my senses and nerves. While you’ll start to fade, I’ll never forget…that first cold breath of air hitting the lungs as I stepped onto the ice. The sound of the puck against the blades of the stick. The crisp sound of the skates crunching into a fresh cut ice. The smell and the feeling of the shocking chill in the arena. The electrifying feeling after scoring a goal like I was on top of the world.

I’ll also never forget the feeling of defeat – a feeling that has become all too familiar over the past two and a half years. But you taught me how to bounce back from defeat. You taught me to show up even after the setbacks. You made me stronger. You made me resilient. And maybe that’s partly why I’m still here today.

I love you but I also hate you. You had my back and then stabbed me in it. How could you do this? We’ve been through so much together. I’ve bled for you. I’ve cried for you. You made me who I am and then broke me down, making me question my existence. You were a part of me. I thought we could get through anything. You gave me confidence and courage. I felt like I could be myself in your presence. You helped me express my emotions. You hurt me. You broke me. You picked me up. You beat me down.

You taught me so many lessons. You taught me to be a good teammate, to be humble, to be patient. You created beauty. But you also caused destruction. You destroyed all I had worked for. You caused me so much pain, but I felt I truly lived because of you. It all changed within a split second, though. Couldn’t you have warned me? It all changed and I can’t say I’ve truly been able to live the past few years, not like this.

You pushed me to my limits my entire life but I always pushed through. There would always be pain, but I pushed through. But this injury was a limit I never could have imagined experiencing. I’ve barely been pushing through. But I’ve come so far, and I think you’d be proud.

You made me question my worth, to feel inadequate. For years you reminded me of who I am. But that person is gone and now you constantly remind me of who I’m not. I’m coming to terms with the fact that maybe that’s okay. I no longer hold the title of an athlete – that’s part of my past and something I used to be. In just a flash, what I knew, what was ingrained into my being was gone. You were gone. You made me happy, but the last few years you made me depressed.

You weren’t just something I played; you were a piece of my identity.

You made time stand still for at least a little bit, an escape from the inescapable. Worries melted away. You became muscle memory, part of my nervous system.

I put you before my health. I have the scars to show it. I sacrificed so much for you. I didn’t want to let you go because letting you go was letting a piece of me go. I wasn’t ready. Suddenly, I wasn’t that athlete anymore. I couldn’t be who I thought I was. I’ve never felt so misunderstood. You used to make me feel understood.

I tried desperately to hold onto you despite the red flags. Maybe you did give me a sign after the first five head injuries but I ignored them. I couldn’t walk away and let our relationship die. I was in denial about us. When I was told I couldn’t afford another hit to my head, that’s when I knew it was over. I started to mourn you. I never really said goodbye to you after college hockey ended. You caused me so much pain then but I think I knew it wasn’t over between us. At least then, when I needed a break from you, it was on my terms. But this was not on my terms, and this isn’t a break. This goodbye is forever.

I feel guilty for questioning you and if you were worth it. I am grateful for the 25 years we shared and will hold onto those memories forever but honestly, I’ve asked myself if it was worth this. Could anything have prepared me for this consequence of playing?

I’ll never forget how terrified and helpless I felt lying on the ice as I struggled to speak and see clearly. October 13, 2018, things changed for us. Forever. The past few years I haven’t been living. I’ve endured pain, suffering, heartache. I didn’t realize I could feel so low. I’ve felt trapped, unable to do things because my body and mind have been at war with each other.

If I had known that would be the last time, maybe I could remember more. But I don’t remember the details of that last game very clearly. Somehow you took that from me. You didn’t even give me the whole game. The worst part is that I didn’t experience the ending with anyone. I left the ice that day for the last time, alone. I didn’t know it would be the last time in that jersey with my best friends. It would be the last time we would get pumped in the locker room to music together, the last time we embraced after a goal. That day was full of lasts and I didn’t even know it. My last faceoff. My last goal. The last time I celebrated with my team. The last time I shared the ice with my friends. The last time we rode in the car to a game together.

The day came too soon, where I hung up my skates. I walked out of the rink for the last time after the game. But the truth is, this day would’ve always felt too soon. I just wish I could go back and live like it was my last time with you.

We never know when something’s going to be the last time. I now have a deeper understanding of fleeting moments and I’m going to desperately hold on to them all, because every moment is fleeting.

I would never wish the physical and emotional pain you put me through upon anyone. But because of you, I was forced to overcome odds, to be stronger. To fight for something. You gave me the light and the dark, the best and the worst times of my life. I was forced into this adversity. My whole life I chose you, but I didn’t choose this.

When I was lost, I’d put my skates on and all my worries would fade. But the past few years you’ve caused me to feel lost – more lost than I’ve ever felt in my life. I’ve looked for someone or something to blame. I’ve even found myself blaming me for this. And while I have looked to you to blame over and over, I know I can’t.

Maybe without the pain, without the defeat, I wouldn’t truly understand just how special our moments were. While I have endured so much over the past two and a half years, you have given me yet another opportunity to grow.

You have given me so much. You have given me life lessons, connections and experiences. You allowed me to see the world. Most importantly, you brought me the closest relationships of my life – blessings that I count over and over. As I say goodbye, I will always remember the way you made me feel and the people you allowed me to meet. Without those people, my life would mean nothing.

I’ve missed you deeply but I’ve also hated you. I’ve been so mad at you. But I forgive you.

This is on my terms – I forgive you.

As much as I wanted to reject you, you will always be a part of my being. Thank you for teaching me so many valuable life lessons. For teaching me to believe in myself. You are part of my story, how I carry myself. You will always be expressed in my conversations, actions, my strength, and my ability to just. keep. going.

I’ve felt a lot like an underdog the past few years but I’m still here, and yet again I’m rising to the occasion. I’m giving this everything I have. That’s something you taught me that can never be erased.

Though I’ve hated you a lot lately, the truth is, I will always love you.

Love,

Drew

Surgery During Concussion Recovery: Is It Worth the Risk?

Prior to my concussion, I was undergoing a work up for a hockey related shoulder injury. I was diagnosed with a torn labrum. I actually received my MRI results the day after my concussion. I saw the orthopedic surgeon who recommended I have surgery to repair it. There was no rush on having the repair; prolonging it just meant I would have to experience the pain and periodic subluxation (partial dislocation) in the shoulder a bit longer. I wasn’t even planning on having the surgery until after that hockey season so then I could rehab it and be ready by the time the next season was due to start.

Because of my concussion recovery and the prospect of being out of the season for the shoulder injury, I thought I would put this surgery off until I was fully recovered. I thought I would be fully recovered from the concussion fairly quickly and the hockey season would be ending mid-April so I booked the surgery for the first week of May. This way, I could play and finish the season before going forward with the operation. The thought of having this surgery during my concussion recovery didn’t even cross my mind.

I was at an appointment with my concussion specialist and he just happened to see this surgery scheduled in my chart. The doctor said, “Why not have the surgery done now while you are out of work?” I didn’t think through how this might affect my concussion recovery but thought if the concussion specialist is recommending it and doesn’t see an issue with it, I should trust his advice. No potential negative outcomes were discussed regarding the impact it could have on my concussion recovery and I didn’t stop to think about it.

I scheduled the surgery for January of 2019, not even three months after my concussion. Going under (anesthesia) was great – it was the first time I had slept deeply in months. I woke up back to reality and was thinking, can someone just put me back to sleep? Unfortunately, this deep sleep wasn’t worth it and I was in for a brutal awakening.

The shoulder surgery was successful and everything went as planned. I was in a sling for six weeks. About three weeks following the surgery, I started physical therapy. The first step of physical therapy was to increase mobility in the shoulder with passive movements (they moved my arm for me). This seemed to be going okay until we had to start the strengthening phase of physical therapy.

At that point, I had already started to struggle mentally and physically. Prior to the surgery, I had struggled with losing my routine and normal activity level. My quality of life was drifting to the poor category. The surgery added to the physical restrictions I had been dealing with that further challenged my mental bounds. The combination of the concussion recovery and shoulder recovery left me feeling so disabled and I started to feel even more down about it with every day that had passed. My daily headaches worsened and episodic migraines became chronic, daily migraines. My brain fog and neurological fatigue became difficult to manage.

The strengthening phase of physical therapy was disheartening, frustrating and belittling. I was unable to add any weight to the strengthening activities because every time we added a resistance band or even one pound, my neck would flare up so badly causing my headaches to become so debilitating that I had to lie in bed for days at a time. This was the first time I realized just how messed up my neck was and that it wasn’t addressed at all.

I was struggling to understand my body. I was struggling to understand why one pound could cause me to be completely incapacitated. I was losing hope in both recoveries and my spirits began to wither. After trying to strengthen the shoulder in physical therapy for about three months, they decided to abandon that plan and attempt to loosen my neck. This continued through the month of May without any improvement.

My headaches continued to worsen among other symptoms – neck pain, insomnia, dizziness, dysautonomia, memory, focus, attention, mental clarity. It became so bad that I was collapsing on the floor and experiencing syncopal episodes quite frequently along with chest pain, shortness of breath and extreme fatigue. It seemed like they didn’t really know what to do with me at that point and I didn’t know what to do with me either.

Good rest following a concussion is absolutely necessary for the brain to heal. After any surgery, sleep and rest is hard to come by. It is typically broken sleep and not restorative. And in my case, sleeping with a sling on every night was nearly impossible. Prior to this, I was already struggling with severe insomnia so this was not a good addition to my recovery.

Physical therapy for my shoulder was abandoned in May of 2019. I persisted to have a lot of pain and stiffness in the shoulder because I never completed the strengthening phase and proper rehab. My shoulder was so weak, my arm felt like a useless, dangling appendage. It seemed like good health was drifting further and further away from me. It wasn’t until starting physical therapy at a new center (The PT Center) the beginning of 2020 where they fully addressed the shoulder and neck. It took about six months to get to a point where we could add weight without wrecking my neck and head.

If you are suffering through a complicated recovery and you are not progressing, you often search to find solutions and learn more about your condition to ultimately achieve relief. This is often how someone becomes knowledgeable in their prospective diagnosis and this is how patients become experts in their diagnoses. Even after all of my education and work as a physician assistant, I did not have the knowledge that I do now about concussions and TBI. I have spent a great deal of time learning more and more in order to find solutions.

I took my doctor’s word for it that going ahead with the surgery would be completely fine at that point in time. In no way am I saying never trust your doctors, but rather, take the time to weigh the options and maybe even get a second opinion before proceeding. I never stopped to truly weigh the risks and benefits and how it might affect my brain recovery which was my top priority. This process has taught me that being your own advocate is so important.

My important takeaway: Avoid surgery unless absolutely necessary while recovering from a brain injury or the aftermath.

What happens following brain trauma that might make one susceptible to worsened outcomes with surgery? What does the research say?

The Cascade That Follows Brain Trauma

Immediately following a brain injury, the brain goes into a state of neuro-inflammation propagated by complex changes at the cellular level. This process has been referred to as the neurometabolic cascade. I wanted to touch on this cascade in order to paint you a picture of the vulnerable state of the brain and how surgery might affect it. This is an extremely condensed version of it, not even scratching the surface.

Definitions:

Neurons: Basic working units of the brain forming a communication network, connecting every part of the body. Each neuron consists of a cell body and an axon.
Axon: electrical signaling tail which I like to call the communication highway. Myelin sheath is the insulation of the axon aiding in communication and speeding up signals
Ions: calcium, potassium, sodium, chloride. Flow in and out of the neuronal cell body and travel down the axons as signaling molecules
Mitochondria: powerhouse of the cell that produces energy
ATP: energy for our cells, made from glucose. Glucose from food -> reaches brain -> enters neurons -> mitochondria turns glucose into ATP for energy
Glutamate: excitatory chemical messenger that in excess causes damage and even cell death
Free radicals: unstable molecules that contain oxygen and easily react with other molecules (opposite of antioxidants)
Blood brain barrier: close knit group of blood vessels and cells that regulate what passes into the brain
Glial cells: Support neurons by supplying oxygen, nutrients and insulate axons. Serve as part of the immune system by aiding in removal of cellular debris, dead neurons and toxins.

Let’s break it down:

Brain trauma occurs: brain jolts hitting the skull causing tearing or shearing of nerve tissue and axons
Axons stretch, becoming porous with holes or break completely, allowing leakage of ions (excess sodium and calcium in, excess potassium out). Broken axons release damaging products and toxins
Excess calcium damages the cell and disrupts cellular transmission. Mitochondria is poisoned. Communication highway (axon) severed.
Neurons begin to rapid fire = dysfunctional communication
Snowball Effect: surrounding cell damage and cell death secondary to toxins
Energy Crisis: Ion pump works frantically to attempt to re-establish a balance
No energy to clear abnormal proteins and toxins from in and outside the cell. Cells starve
Inflammation: Buildup of toxins and inflammatory proteins attacks myelin sheath and cell. Glutamate released causing further damage and excitotoxicity
Decreased blood flow = decreased ATP to brain = worsening energy depletion
Impaired ability to regulate blood flow, impaired response to changes in blood pressure
Free radical accumulation: more inflammation
Blood brain barrier permeability: stuff that shouldn’t be allowed in the brain comes in
Glial cells and axons damaged…inflammation continues

The pathophysiological changes that occur in the brain following trauma is a very complex cascade. Some of the changes are still not completely understood. I have questioned whether these changes can increase the risk of anesthesia and contribute to worsened concussion symptoms to the already vulnerable brain as I experienced following my surgery.

Blood Pressure Alterations and Inflammation in Surgery

Sometimes during surgery, you can experience low blood pressure. Even a mild change in blood pressure could affect the blood flow to the brain which has already been compromised by the injury. The brain after such an injury is already under a great deal of stress and has an impaired ability to regulate blood flow as well as an impaired response to changes in blood pressure. If the brain is already experiencing a deficit in oxygen, even a slight drop during surgery could potentially worsen the vulnerable state that the brain is already in.

Surgery not only has an effect on blood pressure but also glucose regulation and autonomic function. The brain after trauma already experiences impairment in glucose regulation. Autonomic dysfunction is quite common following a head injury and I was already diagnosed with it, so it is not inconceivable that surgery can worsen this process. There have been many cases of patients with a new diagnosis of autonomic dysfunction following a surgery even without head trauma! Sounds like the perfect storm.

Following any surgery, your body produces an inflammatory response. This response is necessary because it sets the stage for the healing process to occur. Every surgery causes stress to the body. When I had my surgery, my body was already under stress from the high inflammatory state sustained from the TBI which I had not fully recovered from yet. I already likely had inefficient communicating cells and altered blood flow. The surgery was trauma on top of trauma or inflammation on top of inflammation.

I still question if this further inflammation added to my complicated and prolonged recovery. I don’t think it’s a coincidence that my concussion symptoms worsened dramatically after the surgery. It felt like it opened up yet another negative cascade in my body.

What Does the Research Say?

I have spent some time looking into studies on post-concussion patients undergoing surgery and the outcomes. My concerns are validated in several different published articles. Unfortunately, no randomized, controlled trials on the outcomes of anesthesia and surgery on post-concussion patients exist. Given that it is quite common for patients with concussive symptoms to present for surgery, with estimates ranging from 6-7%, it seems this should be something to consider for these patients.⁴

Within one year of concussion, typically in the first month, about 8-12% of these patients will present for surgery.⁴Another study showed 5% of recently concussed patients underwent elective surgeries unrelated to the concussion within one week of injury.¹ In reality, these percentages may be higher due to the fact that there are no concussion screening tests implemented preoperatively. With such a prevalence of concussion patients presenting for surgery, the outcomes should be considered.

In a panel session for the International Anesthesia Research Society, it was concluded that future studies are needed for more data but until that is available, the perioperative period of patients with recent concussion should be considered as a potential time period for secondary brain injury. Interestingly, anesthesiologists were surveyed on this matter and most said they would delay elective surgeries until full resolution of concussion symptoms.⁴

Similarly, in a review published in Current Opinion in Anaesthesiology, the consensus is that both acute and chronic repeated concussion may put the brain at risk for secondary injury due to its already vulnerable state. They go on to suggest further research is needed but that it seems reasonable to delay elective procedures until resolution of clinical symptoms.⁸

An interesting quote from a published scientific review in the Korean Journal of Anesthesiology: “It is possible that the use of anesthesia may create a neurocognitive exacerbation worsening pre-surgical symptoms such as headache, dizziness, postural instability, sleep disturbances, memory impairment, decreased processing speed, attention deficit, fatigue, depression, and anxiety. This concern again suggests that it may be safest to postpone elective surgery until the patient is ready to return to school or normal daily activities if possible.”⁹This is particularly interesting to me because I experienced worsening of all of these symptoms post-op.

In an article published in the Journal of Neurosurgical Anesthesiology, patients with pre-op cognitive deficits had an increased risk for worsening post-op cognitive symptoms.¹⁰ This study was not dedicated to concussion patients, so is only suggestive of this risk.In another review from Current Opinion in Anaesthesiology, the conclusion is that those suffering post-concussion syndrome may be particularly clinically susceptible to worsening outcomes due to physiologic instability.¹¹

The data from a retrospective study on patients from July 1, 2005, to June 30, 2015, who underwent surgery after concussion suggests clinicians should have an increased awareness for concussion in patients who have recently sustained trauma including those without a formal diagnosis of such because of the vulnerable state of the brain. It is again suggested that clinicians consider postponing elective surgery until resolution of concussion symptoms.²

While there isn’t much research on post-concussion patients and surgical outcomes, it is something that should 100% be considered and something clinicians should have an increased awareness of. At the very least, risk and benefit should be considered. Even the theoretical risk of exacerbating post-concussion symptoms with surgery should be discussed with patients.

This is definitely something I would consider if discussing elective surgery with my own recently concussed patients. It seems most reasonable to delay elective surgery until concussion symptoms have completely abated, and something I wish I had researched prior to my surgery.

If I had known what I know now about brain trauma and the cascade that follows, I would have never had this surgery during the recovery of my vulnerable, post-concussed brain.

Sources

1. Abcejo, A. and Pasternak, J., 2018. Is a Concussed Brain a Vulnerable Brain? Anesthesia after Concussion – Anesthesia Patient Safety Foundation.

2. Abcejo, A. S., Savica, R., Lanier, W. L., & Pasternak, J. J. (2017). Exposure to Surgery and Anesthesia After Concussion Due to Mild Traumatic Brain Injury. Mayo Clinic Proceedings, 92(7), 1042–1052.doi:10.1016/j.mayocp.2017.03.012.

3. Büki, A., & Povlishock, J. T. (2005). All roads lead to disconnection? – Traumatic axonal injury revisited. Acta Neurochirurgica, 148(2), 181–194.doi:10.1007/s00701-005-0674-4.

4. Guay, Christian A., 2018. Concussion in the Perioperative Period: A Common Condition Requiring More Investigation. International Anesthesia Research Society. IARS Annual Meeting.

5. Giza CC, Hovda DA. The new neurometabolic cascade of concussion. Neurosurgery. 2014;75 Suppl 4(0 4):S24-S33. doi:10.1227/NEU.0000000000000505.

6. Katayama, Y., Becker, D. P., Tamura, T., & Hovda, D. A. (1990). Massive increases in extracellular potassium and the indiscriminate release of glutamate following concussive brain injury. Journal of Neurosurgery, 73(6), 889–900.doi:10.3171/jns.1990.73.6.0889.

7. Mele C, Pingue V, Caputo M, Zavattaro M, Pagano L, Prodam F, Nardone A, Aimaretti G, Marzullo P. Neuroinflammation and Hypothalamo-Pituitary Dysfunction: Focus of Traumatic Brain Injury. International Journal of Molecular Sciences. 2021; 22(5):2686. doi:10.3390/ijms22052686.

8. Pasternak, Jeffrey J.; Abcejo, Arnoley S. Anesthesia and the brain after concussion, Current Opinion in Anaesthesiology: October 2020 – Volume 33 – Issue 5 – p 639-645. doi: 10.1097/ACO.0000000000000906.

9. Rasouli MR, Kavin M, Stache S, Mahla ME, Schwenk ES. Anesthesia for the patient with a recently diagnosed concussion: think about the brain!. Korean J Anesthesiol. 2020;73(1):3-7. doi:10.4097/kja.19272.

10. Sheshadri, V., Manninen, P., & Venkatraghavan, L. (2017). Anesthesia in Patients With Postconcussion Syndrome. Journal of Neurosurgical Anesthesiology, 29(2), 185. doi:10.1097/ana.0000000000000269.

11. Tasker, R. C. (2017). Anesthesia and concussion. Current Opinion in Anaesthesiology, 30(3), 343–348.doi:10.1097/aco.0000000000000459.

How Dry Needling Led to My Five-Day Hospitalization

As I write this, I am taken back to an awful day. A day filled with pain, suffering and fear. A day that I was ready to give up, to completely surrender my life in order to not feel pain anymore. There are no exact words that can fully emanate the emotional and physical trauma that was created by this event.

My concussion doctor recommended I give dry needling a try. The goal was to help release tension in the muscles of the head, neck and upper back. It would hopefully provide relief from my headaches and migraines. Usually when I talk to people about dry needling, they think it is the same as acupuncture. While they both use needles, they are completely different treatments. It is sort of confusing because some people use the two words interchangeably. I am going to briefly explain the differences and then share my experience.

Based on ancient Chinese medicine, acupuncture involves the placement of needles into points along meridian lines of the body. These lines coincide with the body’s organs. The purpose of acupuncture is to restore energy and balance in the body. Acupuncture has been practiced for over two thousand years! Based on Western medicine, dry needling is fairly new, developed in the 1980s. The needles of dry needling are inserted directly into muscles and trigger points to essentially release the tension in those areas and reduce pain.

The training for each is very different and if I had known this is all it took for a provider to practice dry needling, I would have thought twice before going forward with this treatment.

To practice acupuncture in the US, obtaining a master’s degree and attending a Chinese medicine program or accredited acupuncture program is the minimum to become a practicing acupuncturist. There are doctorate programs for acupuncture as well. In addition to a bachelor’s degree, it takes three to four years to complete. The programs are overseen by the US Department of Education. Typically, a minimum of 250-350 supervised patient acupuncture treatments are required prior to graduation which results in hundreds of hours of training in needle technique. Following a program, the practitioner must then pass a board exam prior to becoming licensed. Continuing education is required in addition to the national board certification exam.

To practice dry needling, a provider has to take a 27-72 hour course. Some of these hours may be online with half of those hours being hands-on experience. There is typically no training requirement for supervised patient treatments. This results in the practitioner only having a handful of hours of training in needle technique. No continuing education is required. There is no oversight or accreditation of the dry needling certification programs. There is no standardized dry needling credential.

June 12, 2019. My third dry needling appointment.

I was going back and forth on whether I should give a third appointment a try. I decided to give it one last shot, something I would come to regret. The appointment started the same as the first two. I was lathered in rubbing alcohol and the needling began. The physical therapist started by placing needles in my paraspinals (muscles that line the spine), then my upper traps and shoulders. The last areas needled were my scalene muscles, just above the clavicle in the front of the neck. Things started to feel different than previous appointments when she placed needles in my upper back.

A needle was placed just medial to my left scapula and it caused my whole body to start profusely sweating and made me feel flushed. The area felt like it was on fire. There was one needle to the left paraspinal that was so painful and seemed to be stuck. The physical therapist told me it would not go in and continued to push further. I started tearing up but attempted to tough it out. She eventually took it out because it was so painful. It then bled and she told me I could have a bruise there later. As the last needle penetrated my left scalene, I again felt flushed and experienced an indescribable pain. I was just grateful the appointment was over with. I wasn’t sure if I’d ever go back.

What soon unraveled left me no choice but to never return.

I left the appointment and about two hours later as I was sitting at home waiting to leave for my next appointment, I developed a deep, gnawing pain to my back by my left scapula. Ironically, I was waiting to head to an acupuncture appointment. I initially tried to write it off as a muscle spasm but as time went on, it rapidly started to get worse and I started to become concerned.

The back pain evolved into sharp, stabbing pain radiating through to my chest. My Mom and I got into the car to go to my acupuncture appointment. About ten minutes into the drive, I was unable to take a deep breath and at the end of inspiration there was a popping sensation in my chest. I was slumped over in half in the passenger seat trying to find a comfortable position to breathe in.

My Mom asked me if I needed to go to the emergency department (ED). I again tried to tough it out and downplay it. I also didn’t want to cancel my acupuncture appointment and be charged a cancelation fee; this seems silly now but with all my medical bills piling up, I didn’t want that extra expense. I said to my Mom that maybe it was a muscle spasm but the pain and difficulty breathing was becoming so intense that I started to wonder if something more serious could be going on.

My chest felt like it was going to explode. That’s when it hit me that maybe I had a pneumothorax caused by one of the needles going in too far. A pneumothorax is the medical term for a collapsed lung which occurs when air leaks into the space between the chest wall and lung. The air trapped between the layers causes the lung to collapse by pushing on it. I did a quick google search and typed in, “pneumothorax and dry needling,” and there was a medical case study that sounded identical to mine, resulting in a life-threatening emergency. Even though this made it even more of a possibility now that I read this, I continued to proceed to my appointment.

I made it to my acupuncture appointment which was typically a calming experience. This was not. The standard protocol was to lie on the heated exam table, the practitioner placed the needles (in my hands, wrists, shins, feet and forehead) and then left me in the room where I stayed for 45 minutes until the session was over. I did my best to hide my pain and difficulty breathing as the acupuncturist placed the needles, still trying to convince myself this was nothing serious. I would soon regret this as things took a turn and I really needed help.

My chest pain was worsening rapidly as well as my breathing. My heart felt like it was going to beat out of my chest. Usually there was a working clock on the wall but in this room the clock was broken. I looked at it to see how much longer I had. I thought to myself, is this a sick joke? I started to wonder if I’d make it out of there.

Time seemed to stand still and I felt trapped. I couldn’t move because I had needles all over me and the practitioner was so far away that if I called out for help, he would’ve never heard me. I knew I needed to get to an ED, and to an ED fast. The 45 minutes was up which felt like an eternity, and I told my Mom we needed to book it to the ED. The car ride also felt like an eternity, and I could feel my body decompensating.

The chest pain and difficulty breathing continued to intensify until I made it to the emergency department. Once in the ED, I told the PAs and doctor, “I believe I have a pneumothorax.” The doctor initially performed a bedside chest ultrasound to see if I did indeed have a pneumothorax. This test was supposed to be more sensitive at identifying it, if there was one.

The ultrasound was normal so I felt a little crazy, that this severe pain was nothing. But I knew there had to have been something wrong; I had never felt pain like this nor had I ever experienced such breathing difficulty. At this point my heart was beating so fast, I was very tachycardic (heart rate exceeded normal resting rate) and my blood pressure was dropping very low. I then had a chest x-ray. I was in so much pain and breathing was becoming more and more difficult.

The radiologist called the provider with the urgent chest x-ray result, confirming I had a large pneumothorax. I was given two percocet. Shortly after, I was given one dose of ketorolac (an anti-inflammatory) and three doses of fentanyl for emergent chest tube placement. Despite receiving these medications, it did not even touch the pain. I have a very high pain tolerance and this was the most painful thing I have ever endured. This is something I would never wish upon anyone.

I was kicking myself because just the day before this happened, I had said to a family member, “The good thing is this recovery can only go up from here.” It went down, and went down quickly. I wondered if I’d die; my initial feeling of fear dissipated and I felt calm about the thought of death. Maybe then, all of my pain would be gone. Something I still think about a lot to this day is a text from a friend while I was in the hospital: “Promise me you’ll hang in there.” In that moment, I made that promise and decided to keep fighting.

By the point of the chest tube placement, I was given all of these pain medications and it did not take the edge off. The skin to my left chest was anesthetized with local lidocaine. This was helpful for one thing and one thing only, that being the initial incision to the skin of my chest. After this, the doctor used forceps to break through my muscles and fascia through the ribs. This act is actually quite barbaric; there is no nice or gentle way of doing this as you have to use force to pop through the layers of the chest.

Not only did I feel this stab through the layers of my chest, there was also an audible, tearing sound that I can’t put into words. After the forceps penetrated the chest, the doctor dilated the wound by pushing his finger through it. After this, a tube was pushed through that incision through every single layer of my chest and again, I could feel and hear the tube go through all these layers.

Chest tube placement showing re-expansion of lung. Image by A.D.A.M.

There were eight people in the room besides me during this emergent procedure. These people included my Mom, my sister, two nurses, two physician assistants, a respiratory therapist and the doctor. My Mom and sister sat in chairs beside me as I silently sobbed. I squeezed my sister’s hand through the entire procedure, squeezing so hard until I cut off blood flow and left the imprints of my fingers in her hand.

I thought I would feel instant relief when the tube was placed but this was not the case. After the tube was placed, I was still in agony. I couldn’t move or breathe without being in excruciating pain. I could not get comfortable. I had a repeat chest x-ray to ensure the tube was in the right location, causing more pain.

It was late in the night by the time I was admitted to the hospital. I must say, I did feel I lucked out in one aspect of this experience, getting my own single hospital room. No roommate was a big win.

Each morning, I was greeted by the radiology tech for a portable chest x-ray. They were so kind but I hated the pain associated with them. I ended up having six chest x-rays during my stay and then a CT scan of my chest. Each imaging study, I endured extreme pain to get into the proper position for it.

My hospital stay was far from pleasant or easy. I was hospitalized with the chest tube in place for five days. I experienced severe pain the entire time, sometimes going unmedicated for hours straight. Unfortunately, some of the nurses didn’t believe that I was in severe pain and ignored me despite my pain medication orders being in the system from my doctor. I had to lay in one position and could not move because if I did, I would cry out in pain. My IV line kept infiltrating which means it gets blocked or fluid and medications leak out of the vein into surrounding tissues. This left me unmedicated even further.

When they finally did medicate me again through what was supposed to be a good IV line, it turned out to also infiltrate in which all of the medication went up into my arm, causing it to feel like it was on fire for an hour straight. I laid in bed for that hour writhing and sobbing in pain. This happened so many times that they had to request the IV team to come and place a line using an ultrasound which took a great deal of time. I wasn’t sure how much more I could handle. I started using an incentive spirometer, a device used to help expand the lungs fully in order to keep my lungs active which caused further pain.

Something that I’ve repeated in many of my posts is to be your own advocate and when you can’t be, to have someone there who can advocate for you. Thankfully, I had many people willing to advocate for me during this hospital stay when I needed it the most and wasn’t able to myself.

I had many visitors for which I am eternally grateful. I even had friends and family willing to rub lotion onto my legs because those rooms are so dry. Get yourself some friends who are willing to rub lotion onto your legs!

A little lotion rub in my fashionable hospital socks

The best part of my hospitalization was my first shower while there, which didn’t happen until day three. I felt disgusting. My sister came to give me a shower which turned out to be absolutely hilarious.

The shower had a small lip to keep the water in, possibly one inch in height. Because of where the chest tube was, we had to be careful not to get that area wet. I wasn’t very helpful as I stood there like a statue to avoid increasing my pain while she bathed me and washed my hair. We didn’t realize until after I was done showering that we had accidentally flooded the room.

As we stood there in the flooded room, my feet completely covered with water, we just stared at each other and cried laughing. It hurt me so much to laugh but it was welcomed. I really needed to laugh. We became a little concerned. How could we clean up all this water before a nurse came in? My sister started using plastic bags and towels to push the water back into the shower. We threw towels, scrubs, gowns, sheets and anything else we could find on the floor to soak it up. This is something we still laugh about to this day. I can’t explain how badly I needed this moment in that hospital room that day.

One of my cherished visitors bringing me a smile

One of the key focuses of my brain injury recovery at that point was to minimize stress. You can imagine what kind of stress this brought to my body and my mind. The pneumothorax caused my chest to hurt so badly that I could not sit up straight, or lie on my left side or back. This specifically caused me to favor the left side of my chest which led directly to stiffness and pain along the left side of my back and chest. This also led to all of the ribs on my left side to be stuck and stiff as well as the muscles to my scapula. For months afterwards, I experienced intense, sharp pain to my left shoulder blade that radiated to my chest and down my arm in addition to shortness of breath and deconditioning.

I could not lift my left arm to bathe or shower myself for a prolonged period of time after due to the pain this caused to my chest. In such a vulnerable place, I was and am still so grateful for the compassion and help from friends and family. Aside from the physical symptoms, the emotional toll was a lot for me and difficult to navigate to say the least.

If I had known a pneumothorax was a risk of dry needling and had known that a physical therapist could practice dry needling just after taking a one weekend or online course, I don’t think I would have gone forward with it. It’s easy for me to say this now after experiencing this outcome. While the incidence of this happening is low, it’s important to recognize that this can still happen.

I attempted to find an incidence rate of dry needling induced pneumothorax. It’s difficult to find. There are some stats shown below but long story short is, it is rare and with a qualified, trained professional this should NOT happen.

The largest prospective study comes from Germany showing an incidence rate of 1 in 1, 300, 000 consultations
0 incidences of pneumothoraces in over 66,000 consultations in the UK
0 incidences of pneumothoraces in 65,482 consultations over a 6-year survey in Japan
2 incidences of pneumothoraces in 139,988 consultations in Czechoslovakia
More research needs to be done to establish the actual incidence rate because the studies include dry needling that does not involve the thoracic region making it questionable if some of the pneumothoraces could have been spontaneous and not caused by dry needling

There is a possibility that I would have gone forward with the treatment even knowing this risk because in my head, the similar melody that “this couldn’t possibly happen to me,” would play over again, similar to my brain injury and the destruction that followed. This traumatic experience still brings me anxiety and set me back big. Again, it is something that I would never wish upon anyone. I would caution anyone considering this treatment to consider the risks.

I now have a scar to my chest which is a constant reminder of this trauma. It likes to remind me every single day as I experience pain to the site in the form of pins and needles, like someone is poking the scar over and over again with a sharp object. If the pain subsides, it itches like crazy. This is unfortunately because it didn’t heal properly and became a hypertrophic scar, leaving it raised and thick. While this is a constant reminder of the trauma inflicted by this event, it is also a reminder of my resiliency. That is something I hold onto.

Sources

McCutcheon, L., & Yelland, M. (2011). Iatrogenic pneumothorax: safety concerns when using acupuncture or dry needling in the thoracic region. Physical Therapy Reviews, 16(2), 126–132.doi:10.1179/1743288x11y.0000000012

A Light In Pittsburgh

Over the past two and a half years, I have listened to hours and hours of TBI podcasts to learn more and seek out new treatment options. I heard one about neurosteroids and neuroendocrinology around one year following my injury. I already had a suspicion about six months after my injury that I had some sort of hormonal dysregulation going on. After trying over 20 different medications to treat my symptoms I felt even worse from the side effects. I was coming to the conclusion that these drugs were just bandaids, one layered over another, burying the underlying cause even deeper. Could this hormonal dysregulation be the root cause of all of this?

I had brought it up to several doctors who had dismissed it and essentially brushed it off. It seemed like this idea of addressing hormones was shunned. One doctor said to me, “I don’t think hormones really play a role in brain injury recovery.” Because it was dismissed by several doctors, I thought to myself, maybe that was a dumb idea thinking this could be what’s going on with me after all.

I sort of forgot about this until just a couple months ago when I again heard a podcast about addressing hormonal dysfunction and using neurosteroids to treat patients who had suffered TBI. It sounded like it was actually working, like there was so much success with this. The science was there for it. Could this actually work for me? I wasn’t going to bring this to my doctors because I felt like it would be dismissed again. At some point in my recovery, it truly felt like I was fending for myself. Even some of the new treatments I found on my own that actually did provide some positive improvements in my recovery were still brushed aside by some of my doctors.

After I heard of this treatment for a second time in a podcast, I thought, I need to find a doctor who is practicing this type of medicine for TBI. That’s when I found Dr. Valerie Donaldson in Pittsburgh, who completed a four-part certification process taught by Dr. Mark Gordon, pioneer of Neuroendocrinology TBI treatment protocols. I booked an appointment three weeks out and was elated because I didn’t even know if I would be able to get in. I was a little scared to commit to this TBI program because I was thinking, what if it doesn’t work? What if it turns out to be a huge failure or worse, what if it ends up hurting me and setting me back like other treatments? I would never know if I never tried, so I booked the first appointment. February 17, 2021, would be a good day to remember.

My Mom asked me two days before the appointment if we should postpone it because we were getting a huge snowstorm the next few days during the drive. I said, “Absolutely not, we need to make it to Pittsburgh tomorrow.” I couldn’t wait any longer because I was feeling so desperate and somehow it felt like this time would be different. I didn’t want to postpone this appointment even a day. At that point, I felt so desperate I may have even put on several snowsuits and started walking to Pittsburgh in the snowstorm. I was holding onto this thought that maybe this was the last part of my long journey to healing. This could be it. On the other hand, I was bracing myself in case history repeated itself and this was another failure in this journey like many before.

My Mom and I drove to Pittsburgh as planned. It did turn out as a blessing that the snowstorm held off during our driving hours. We drove the day before the appointment because I wouldn’t have been able to tolerate the drive there and back in one day. We stayed overnight which left me with nervous jitters like the night before a big game.

Something that has repeated itself throughout my recovery is that I’ve been treated like a constellation of symptoms rather than a person. Soon after the injury I was seeing 20 different providers for each symptom I was experiencing, none communicating with each other and so instead of a person I became this long list of symptoms. Each appointment was the same – check off the boxes and symptom score, tell me to come back in a month to do it all over again. Nothing new was being offered; I wondered why I was even going anymore. It’s like they gave up on me and weren’t able to offer me any more options to get better. This contributed to my identity crisis. I was struggling to know who I was anymore all while not being treated like a person. It was like kicking me while I was down. This changed in Pittsburgh.

I woke up the next morning – appointment day. I was hoping my insomnia would give me a break, but I only got a couple hours of sleep in. I was nervous, excited, exhausted, foggy. Time seemed to move slowly that morning and I was getting antsy to leave the hotel to go to the appointment.

We made it to the doctor’s office. I stood outside, staring at it, taking a big breath in. “Please let this help me,” I said aloud. It felt almost like I was pleading. I’ve prayed during my recovery but I haven’t felt like my prayers have been answered. I’ve struggled with the reason for all of this, if there is one. We walked into a cute, little office where we were greeted by the secretary with kindness. I was first taken back to have my blood drawn for testing and then joined my Mom back out in the waiting area. I sat there, a little fidgety, until we were called back. I could suddenly hear and feel the presence of my heartbeat. My Mom and I walked back into the doctor’s office.

We were greeted warmly by Dr. Donaldson and took a seat in the two chairs before her at her desk. She was comforting to talk to and I was met with so much empathy, kindness and understanding. Quickly, my nervousness and anxiety melted away. My heart became calm. Her knowledge was extremely humbling. I had said to her that I wanted her to implant all of her knowledge into my brain. When I described something I was experiencing, I didn’t feel degraded but rather understood. I was not being dismissed which had become a norm at many appointments leading up to this.

I walked into my appointment thinking the most impressive thing about the doctor would be her credentials and list of certifications (Internal Medicine, Emergency Medicine, Anti-Aging Medicine, Functional Medicine, Regenerative Medicine) but I left with the most impressive thing being her compassion, empathy, knowledge and ability to make me feel like I was actually being cared for and understood. I felt like I was in the right hands, that would actually do no harm. Not only that but the fact that she was able to bring me hope. And I so desperately needed that to keep going. This was an important reminder that compassion and empathy go a long way and at just the right moment, might be the thing that can bring a person out of a dark and lonely hole. She made me feel like I would be okay. And there are no words for that.

I left the office feeling lighter, like a weight was lifted off my shoulders. I was so overcome with emotion that happy tears streamed down my face. That day made me realize just how dispirited I had become. My visit with Dr. Donaldson provided hope for the first time in two years. It felt like I wouldn’t have to fend for myself anymore.

I felt not only like a person but a person who would get through this. When Dr. Donaldson said she would get me better and I would heal, I believed it because it was genuine. I trusted her. My trust with medical providers through this time period was hindered, leaving me skeptical and wondering if they really cared about my outcome at all. Leaving this appointment with that trust and hope was everything.

This glimmer of hope brought a positive feeling in me that I can’t fully articulate – a refreshing feeling that I had forgotten existed. I don’t want to get my hopes up too high because after seeking so many treatments over the past couple years with many downfalls and setbacks, it’s hard to fully let go of that. I have a really good feeling about this, though. To feel understood and like a whole person rather than a list of symptoms is a rarity these days and I felt that and continue to feel that in appointments with Dr. Donaldson. For now, my spirits are back and I’m going to ride this good wave as I continue in this program and hopefully ride it all the way to full healing.

After going to nearly 300 appointments and seeing my fair share of doctors over the past two and a half years, it had become common for follow up visits with those doctors to be filled with anxiety, stress and even dread. I have not felt this way with Dr. Donaldson. On the contrary, I look forward to my appointments with her and that speaks volumes. I am going to explain what this treatment consists of and this journey further in a future blog post as I continue along.

I am so grateful for Dr. Donaldson. There was a light in Pittsburgh that I so desperately needed. And I have a feeling, it’s just going to get brighter.

DR VALERIE DONALDSON – Regenerative Medicine Center

Identity Crisis

It was just a little over 2 months post-concussion when I began to question everything in my life. The symptoms were relentless and still so bad that I started asking myself if when I’m cleared to play hockey again it would be worth the risk. It really didn’t make sense that I was even considering playing again at that point because I was nowhere near being cleared. It brought me so much anxiety thinking of this decision – to play or not to play. I discussed my concerns with my concussion specialist who then referred me to see a sports psychologist.

The sports psychologist asked me what my biggest concern of playing again was. I explained my fear of this happening again and experiencing the same or an even worse outcome. I will never forget what he said to me. He said, “Wasn’t that always the risk?” I can’t explain why this one question made me feel like my brain was spinning out. My mind was going all over the place. I thought to myself, wow, it really was the risk of playing the whole time, the past 25 years. Every time I stepped onto the ice, there was this persistent risk of injury.

While it was a risk my whole life, I never stopped to really think about it. Thinking back, we were never taught of serious risks like this. Yeah, you might dislocate a shoulder or break a bone but an injury that alters your entire life? No, that won’t happen to me. We were never taught that a concussion was anything really serious. Was I always one hit away? Anyway, the sport that is part of me couldn’t do this to me, right? The psychologist was absolutely right and I thought, if I had known this was the risk I wouldn’t have played. But that statement in itself seems like a betrayal to hockey so essentially, it’s a betrayal to myself.

It wasn’t until this appointment that I realized what was happening within me. I discussed my feelings and thought process with the psychologist and he said, “You are experiencing an identity crisis.” I sat there and stared at him in a prolonged moment of awkward silence. He was right. Why hadn’t I thought of that? It made complete sense.

What I felt then, 2 months post-concussion, I still struggle with today, 26 months later. It’s like a void within me. While I don’t feel this way all the time like I had before, sometimes I still feel like I don’t know who I am anymore. I am unable to work and I am unable to play hockey. After all the years of hard work, school and money to achieve my dream of working as a PA, I am unable to do that. After playing hockey for 25 years to the point that it’s part of every fiber of my being, I am unable to play.

Where do I fit anymore?

Who we are becomes so deeply intertwined with what we do. When asked who we are, we often respond with our occupation, our passions, our family and how many siblings we have. It’s an interesting thing to think about. If you ask a kid who they are, more often than not, they will respond with something similar to, “I am a hockey player.” That’s what it was like for me. But then I achieved my dream and so I became a hockey player and a physician assistant.

Our identities are so important. It’s years’ worth of memories – it tells your story. A story within that you carry around with you everywhere you go – a beautiful masterpiece spanning your entire life consisting of strengths, weaknesses, personality, passions and experiences that ground you and keep you rooted. It’s this story that is told to others by how we communicate, think, act and feel. Without even knowing it, we are telling it in our everyday lives. It shapes our morals, knowledge, and ultimately helps us understand our place in the world. The way I see it, every interaction we have reflects this personal story. It’s what makes you, you and what makes me, me.

Hockey has been all-encompassing for me. Sometimes it takes kids many years to find that one sport for them. That wasn’t it for me, though. At the age of 3, my skates were laced up for the first time and I would never look back. My life revolved around hockey. I was in the hockey rink so much growing up that it felt like a second home. Even when I wasn’t on the ice playing, I was running around the rink with my siblings and friends.

From a young age, my evenings were mostly spent at hockey practice and my weekends involved traveling to tournaments. The summer before college I spent most of my time in the gym and on the ice practicing my stick handling and the accuracy of my shot. In college, we were either on the ice or in the gym during the week and either playing home games or traveling on the weekends. Going into college I didn’t really stop to think about my future after hockey. I just wanted to play, and in the moment that was good enough.

So many hours were spent training, traveling and competing. Having this constant thing in my life brought me ambition, purpose, deep friendships, and relief from the stressors of life. There was always a feeling of gratification while playing.

Hockey soon became a part of me, a foundation. It was this special place within me of coherence that always remained constant even in moments of uncertainty. It was a safe haven. I realize now it’s ridiculous to call it a safe haven. My problems seemed to melt away when I stepped onto the ice.

It wasn’t just the physical component of the sport I lost but the emotional and psychological component. The camaraderie of the team, the deep connections my teammates, the consistent outlet where I could escape – vanished. The physical loss seemed somewhat easier to cope with than the psychological loss.

Being forced out of hockey and leaving the game on terms that were not my own, I started the grieving process of the sport. It took me a very long time to realize I was grieving. I was grieving the death of hockey and grieving my athletic identity. The foundation that grounded me also ended up destroying me. It was like a part of me had died, and I had started to grieve that part of me too.

I’d experience unexplained periods of anger. Depression and guilt became frequent emotions. I think maybe I kept a lot of the details of my recovery to myself for so long partly because of denial – denial from this major loss in my life. I also felt that I would be viewed as weak-minded or ungrateful if I shared all of it. Even sharing just a little of what I was going through brought judgment and misunderstanding from others so I almost felt like I had to downplay or belittle the severity of it too.

I have experienced recurring thoughts and questions:

Who am I anymore?

What can I possibly contribute to the world right now?

I had a fear that everyone would move on without me. But that’s life – it carries on. Soon after, it seemed like I was stuck in place watching everyone move on without me. I thought this was something I would have to face alone. Others in my life moved on with work and relationships.

My teammates continued the season and traveled to tournaments and went on to nationals. I really thought I would be better to go with my team but a huge part of this was denial. My teammates tried to keep me connected by texting and calling. They even took a cardboard cut-out of me and sent me photos of them with cardboard me. It was so thoughtful and something I was grateful for but even so, I felt like an outsider. I was no longer part of that – the camaraderie and connectedness of the team.

It seemed like I was stuck in a bad dream, my feet cemented to the ground. I’d try to follow but couldn’t and was stuck in place. I’d scream out but everyone was getting further and further away and couldn’t hear me anymore. It felt like I was left behind. And soon enough, it was like I was trying to leave me behind too.

Hockey was like a way of life. It fueled my life in so many other areas and bled into them – my personality, my confidence, my strengths. I didn’t just lose my job and hockey, but lost my energy, independence, spunk, and confidence. I lost a sense of purpose.

Viewing the video of my injury and my body lying there on the ice I think of the saying, “Leave it all out there,” meaning leave everything you have on the ice or the field. It really does feel that way because it’s like I left myself there that day.

Post-Concussion Isolation

I remember the first Thanksgiving following my concussion. I didn’t realize that this occasion of coming together could be so dark, painful and even more isolating for me.

As a fresh reminder, I have five brothers, four sisters, seven nieces and eleven nephews. So, you can imagine just how big some of our family gatherings are. My very large family piled into the house. Just greeting everyone produced a lot of anxiety and required all of my depleted energy. I was so troubled by my vision that I felt guilty for not being able to maintain eye contact and having to look away frequently. It was so painful and that is still an issue I experience to this day.

It didn’t really occur to me to mentally prepare for the occasion, maybe partially because I was still in denial about my injury and because I hadn’t fully understood what was going on inside my body at that point. I figured it wasn’t a gathering with strangers so it would be completely comfortable and enjoyable.

As more and more people arrived, the more and more stimulation I experienced. I was having a difficult time processing the noise of the various conversations and the movement of people in the house. I felt like I was going insane attempting to maintain a conversation while hearing all of the background noise on top of the ringing in my ears. I kept going up to my room to hide in my bathroom to get away from it all for brief moments. Why can’t I even enjoy my family’s presence? It’s not like I was mingling with strangers. I could feel myself shutting down, breaking down.

Because of the amount of people at Thanksgiving, we had several very long tables set up and connected together. I took my seat at the table and looked around at everyone conversing, laughing and enjoying the moment. I wanted to experience that but couldn’t. Everyone started eating and just hearing the silverware clinking on the plates began to hurt my ears. The tiniest movement of someone bumping the table or moving their chair caused me to feel so dizzy and nauseated to the point I felt I was going to throw up. I felt too embarrassed to ask everyone to stop nudging the table so I didn’t speak up.

I couldn’t enjoy it. I sat at the table surrounded by my large, loving family yet felt so alone. I was physically there, but almost felt invisible. I felt so removed from myself.

Of course, many of the conversations I engaged in included questions about how I was doing and feeling. I said I was “okay.” This was the easy response that took up the least amount of energy. I was told I “looked good” or “I looked fine.” While I may have looked “good” on the outside, I was certainly not feeling good nor did I feel fine. This was so troubling to me – the external invisibility of the injury – a theme that has played over and over throughout my recovery. There’s really no external sign of what I was and am going through.

After the meal, everyone gathered at the table to play some games. I sat and watched. I smiled to essentially “play along.” This was just a lie to myself and everyone there. I didn’t want to draw any attention to myself nor did I want to be a downer. The games started to become more energetic and the environment became so loud.

There was a lot of movement at the table; it felt like it was constantly moving or vibrating. I became so dizzy and nauseated that I finally had it in me to speak up and ask if they would stop bumping the table. I felt embarrassed and also crazy for asking this because it was something that was so subtle and probably not even noticeable to everyone else. Pre-injury, I would have never noticed it.

I continued to watch. The longer this carried on, the more symptoms I developed. The longer this carried on, the more disconnected I felt. It was so disheartening to me because this was my family who I was supposed to feel comfortable with. It never crossed my mind that I would experience this with those really close to me. Questions started popping up in my head. Will I ever be able to enjoy this again? When will I feel like myself again? Will anyone ever fully understand what I’m really going through? Where do I belong anymore?

Everyone left and I went to my room where I sat in the dark, holding my head. Crying uncontrollably, I continued to suffer in silence.

It felt like a nightmare and I so desperately wanted someone to wake me up.

The Fainting Disease: POTS

November 17, 2018 – My First Syncopal Episode

It was about five weeks post-concussion when I started to experience another issue which was quite frightening. At that point I really didn’t think I could develop any new issues. I woke up at 0700AM one morning after tossing and turning all night. I got up to walk to the bathroom and collapsed on my bedroom floor.

I don’t know how long I was out but opened my eyes to find myself lying on the floor. My body felt tingly and numb. My legs felt very heavy. I laid there like a pretzel, terrified. I didn’t have enough energy to scream for help. Eventually, I crawled back into bed and called my Mom on the phone. She came up to my room to check my blood pressure. It was 80/60, very low. My heart rate was 160, very high.

After the syncopal (fainting) episode, I didn’t feel right and was very fatigued. I began to experience heart palpitations and started to experience chest pain. My head hurt but also felt like it was floating. I laid in bed for the rest of the day because I was too weak to move. I thought maybe this was just due to dehydration or lack of sleep. I hydrated as much as possible throughout the day.

I saw my concussion specialist and explained the event. He was concerned that maybe this was HCM (hypertrophic cardiomyopathy) which is the cause of sudden death oftentimes in young athletes. He referred me to a sports cardiologist for further testing. The soonest I could get in was almost a month away.

December 4, 2018 – Three Weeks Later

I thought that maybe I should see a chiropractor and have my neck adjusted. Maybe this would help with the headaches and neck pain. He was booked for months and so I was on the waitlist. I got a call that morning that he had an opening and I was so thrilled to go to the appointment and hopeful for relief.

I checked in to my appointment and started walking over to the waiting area when I suddenly felt very hot and started profusely sweating. My head started pounding and my stomach was in knots like I was being stabbed. My vision started to tunnel, my lips went numb followed by my arms and then my legs. I started seeing spots and felt like I was going to pass out. No one was near me for help. I thought, okay I just need to make it to the bathroom to splash cool water on my face. It’s not far.

I didn’t make it and must have passed out because I woke up in a hallway somewhere along the way to the bathroom. I felt so weak, like I could just sleep there for days. I needed to find help but the nurse’s station seemed so far away. I got up to walk to the nurse but I started feeling like I was going to pass out again. The nurse saw me and started walking towards me but my vision started to go black and I told her I thought I was going to pass out.

At that point my vision was black and I was leaning all of my body weight on the nurse. I didn’t know what else happened between then and lying on an exam table with my legs propped up. There were five doctors standing around me. My blood pressure was 70/40, again very low. For the rest of the day I had a headache, fatigue, chest pain and heart palpitations. I felt more fatigued than I ever had in my life.

This was a new issue that I wasn’t really aware of following a concussion. I was eager to see the sports cardiologist and hoped that I wouldn’t have another episode before then.

December 11, 2018 – Sports Cardiology Appointment

My Mom and I made the trip to the city inside of a city, Cleveland Clinic Main Campus, for my sports cardiology appointment. This was an all-day event, starting with an EKG and then an ECHO (echocardiogram or ultrasound of the heart) to look for any structural abnormality. Both were normal. The cardiologist took a very thorough history and physical exam and determined I should wear a heart monitor for two weeks to rule out any arrhythmias. He anticipated that would be normal and suspected I had some form of dysautonomia secondary to the brain injury and so referred me to the syncope clinic the next day. My visit to the syncope clinic would also contain a lot of testing and I was there for almost the entire day.

I had a lot of blood work done and had undergone an autonomic tilt table test. This is a test that determines how well a patient’s autonomic nervous system controls heart rate and blood pressure by recording these measurements in different positions. I was strapped to an exam table while hooked up to a heart monitor, a blood pressure cuff, and pulse oximeter (measuring oxygen levels). The test was conducted over 90 minutes and in increments the table was lifted while recording my heart rate and blood pressure on a minute-by-minute basis until the table was completely vertical. A risk of this test is fainting on the table but thankfully this did not happen to me!

I then had an exercise stress test to record my heart’s electrical activity while active. This was normal other than a weakened response which could be due to deconditioning. I then saw an exercise physiologist who went through the results and gave me restrictions on types of activity and also maximum heart rate cut off for exercise. They also recommended I begin using a heart rate sensor.

After all of the testing, I was diagnosed with a form of dysautonomia called postural orthostatic tachycardia syndrome (POTS). POTS is termed “the fainting disease.” For me, this condition was caused by the TBI and later I would find out that it was complicated by chronic infections.

I will do my best to explain what all of this means because these systems in the body are very complicated.

What Is Syncope?

Syncope is a brief loss of consciousness triggered by a sudden decrease in blood flow to the brain. Lay terms of syncope are fainting or passing out. The person regains consciousness when blood flow adequately returns to the brain. There are various causes of syncope and in my case this is why I had so much testing to identify the cause.

What Is the Autonomic Nervous System?

The autonomic nervous system (ANS) regulates various processes in the body such as breathing and blood pressure. This system works without a person’s conscious effort and works automatically or autonomously. The number of systems the ANS is involved with is phenomenal – heart, lungs, blood vessels, stomach, pancreas, kidney, adrenal gland, bladder, small and large intestines, liver, gonads, mouth, eyes, nose, throat. With that said, the ANS controls so many body processes: heart rate, breathing rate, blood pressure, metabolism, temperature, digestion, urination and defecation, sexual response, production of body fluids, balance of electrolytes and water.

The ANS has two divisions – the parasympathetic system and the sympathetic system. The ANS receives information from the body and either stimulates certain body processes via the sympathetic division or inhibits certain body processes via the parasympathetic division.

The sympathetic system is activated under stressful circumstances and is referred to as the “fight or flight” system. This system increases heart rate, increases breathing, increased blood flow to muscles, causes the pupils to dilate and for you to sweat. This is all activated to escape danger or withstand stress. Because it turns on in emergent situations, other less important functions like digestion and urination are slowed down to allow the energy to be placed where it is needed the most. Through clustered nerves in the cervical spine, this system connects to various parts of the body.

The parasympathetic system controls body processes under normal circumstances and is referred to as the “rest and digest” system. It helps conserve energy, slows heart rate, decreases blood pressure, and stimulates digestion. Through clustered nerves where they connect from the spine into the skull, also known as cranial nerves, this system connects to various parts of the body. If there is dysregulation of any of these clusters of nerves for both systems, unpleasant symptoms can occur.

What Is Dysautonomia?

Under normal circumstances, both of these divisions of the ANS are in perfect harmony and synchronize simultaneously throughout the day to maintain a balance. When the ANS loses this balance and one division becomes inappropriately dominant, this is called dysautonomia. There are several different medical conditions that fall under the term dysautonomia, but all of these conditions are a result of some malfunction in the autonomic nervous system. People with dysautonomia can experience a multitude of symptoms which can be vague but often disturbing.

There are many causes of dysautonomia: neurological conditions, trauma, toxic exposures, viral infections. There is no cure for dysautonomia but symptoms can be managed; this usually takes a lot of time to find a treatment plan that works for each individual.

What Is POTS?

Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder characterized by a very fast heart rate that typically occurs during positional changes like when a person stands after lying or sitting. The heart rate can speed up by 30 beats or more per minute. Along with the abrupt increase in heart rate, there can be a drop in blood pressure and ultimately syncope. This condition is more common in women than men.

The structure of the heart, as in my case, is typically normal. For unknown reasons, the blood vessels do not respond efficiently leading to pooling which can then result in syncope because of the lack of blood getting back up to the brain.

POTS symptoms might include but are not limited to: headache, fatigue, flushing, shortness of breath, chest pain, lightheadedness, syncope, tachycardia (rapid heart rate), GI upset, temperature sensitivity, exercise intolerance, cold extremities, high or low blood pressure, sensitivity to light, mood issues, neck tension, sleep disturbance, unexplained aches and pains. The symptoms can be very disabling and diminish quality of life. I have struggled with every symptom listed above.

The disability that can result from POTS has been compared to the disability caused by conditions such as congestive heart failure and COPD.¹

There are some very alarming statistics related to this condition. Because POTS is not well understood in the medical community and there is such a prevalence of vague symptoms, there is typically a delay in diagnosis which on average is 5 years and 11 months. Within the first year of symptoms, only about 25% of patients were diagnosed with POTS. About 59% of patients prior to proper POTS diagnosis were told by a doctor prior that their symptoms were “all in their head.” Before properly being diagnosed with POTS, 27% of patients had visited more than 10 doctors. 69% of patients with POTS were initially misdiagnosed with an anxiety disorder before being properly diagnosed.² Peer-reviewed research has shown that the prevalence of anxiety disorder in POTS patients was not significantly greater than the general public.³

Thankfully, my diagnosis was made promptly after symptom onset.

How Might A Brain Injury Affect the ANS?

The physical trauma from a traumatic brain injury alone can lead to dysautonomia. This isn’t fully understood yet by the medical community and ongoing research is being conducted for more understanding. POTS actually wasn’t found to be a late complication of TBI until recently. Specifically following a TBI, if dysautonomia occurs it almost always involves sympathetic system dominance: this means that you are stuck in this fight or flight state. The body thinks that by doing this it is protecting itself but in reality, this ends up harming you and leading to many problems. This response would be great if I were evading an attack by an animal while hunting for my next meal like our hunter-gatherer ancestors!

What Has Been the Most Helpful POTS Treatment For Me?

Due to the fact that there are so many symptoms one can experience with POTS, there can be an overlap in what exactly is causing them. Unfortunately, there is no way to know with certainty if the remaining symptoms are directly being caused by POTS or just the aftermath of the TBI.

With that said, while I still experience a multitude of symptoms which may or may not be related to POTS, the syncopal and collapsing episodes are finally at a point where I can say they are well controlled. My heart rate has also been better controlled. I have finally been able to identify some triggers for me; some are still unknown. It took over a year from my diagnosis to get to the point where these syncopal episodes are controlled for the most part. While I still do experience moments where I black out, actually fainting and collapsing has become less and less.

We tried countless medications in an attempt to control my heart rate and blood pressure but unfortunately, I was refractory to treatment and experienced a lot of side effects. Some medications I tried without success: nadolol, metoprolol, midodrine, duloxetine, fluoxetine, fludrocortisone, desmopressin. There had been several times where IV fluids had helped provide some temporary relief but this was not a long-term solution.

In addition to the medications I was advised to try compression stockings but unfortunately, they didn’t provide relief and putting them on was a strenuous workout! Something very beneficial has been closely tracking my heart rate. I track my heart rate with a few different devices but the most accurate and useful has been the Polar H10 Heart Rate Sensor, which has been researched extensively.

Under the care of a functional medicine doctor, I was treated for underlying inflammation and chronic infections that I wasn’t even aware of having. I didn’t arrive at a stable point until after I received treatment for these infections so I would like to believe this did have a positive effect on my syncopal episodes. This is why I think it is critical to have a provider who is willing to look intricately to find the root cause of illness.

Anything that adds stress in your life can cause the sympathetic (fight or flight) system to dominate. I have incorporated meditation into my daily practice. Though I am not sure how much of an impact this has had in controlling these symptoms specifically, I believe it is providing positive benefit in other areas of my recovery.

I was advised to increase sodium in my diet to 5 grams a day. It is impossible to eat this much sodium in diet alone so I had to try a few different companies that make sodium packets or tablets that dissolve in water. After trying several, I found a company called Nuun that makes clean electrolyte tablets that dissolve in water and they actually taste good. I drink 1 or 2 tablets a day in my water. I do notice a difference if I don’t drink this on a given day so I believe this is helping.

The most influential and helpful treatment for my POTS diagnosis has been physical therapy, specifically focusing on core and leg strengthening. These strengthening exercises increase muscle mass, directly leading to better blood return to the heart and brain. It was a challenge at first to find a balance at physical therapy because increasing the heart rate is good for concussion rehab and the brain, whereas increasing the heart rate too much can worsen POTS symptoms. After many months, we found a balance and it took about 5 to 6 months to notice a positive change in my POTS symptoms. While I know there is a long road ahead, I am grateful for this progress and the team I have at physical therapy.

Sources

What is dysautonomia? Dysautonomia International: http://www.dysautonomiainternational.org/page.php?ID=34. Accessed February 11, 2021.
Dysautonomia International: Diagnostic Delay in POTS. http://www.dysautonomiainternational.org/page.php?ID=184. Accessed February 11, 2021.
Raj V, Haman KL, Raj SR, et al. Psychiatric profile and attention deficits in postural tachycardia syndrome. J Neurol Neurosurg Psychiatry. 2009;80(3):339-344. doi:10.1136/jnnp.2008.144360

My Legacy Pledge

Those who know me and the depths of my recovery know that one of the things I struggle most with is feeling like I am unable to contribute to the world right now. My work as a physician assistant gave me a sense of purpose because I was able to help others when they needed it the most. It felt like I was doing good and contributing something positive to the world. Being unable to work in addition to losing my independence in other areas of my life due to this brain injury has left me feeling a bit lost because I want to continue to positively contribute to something greater.

I have decided to pledge my brain to the VA-BU-CLF Brain Bank upon my death. This organization is the largest tissue repository in the world specifically focused on understanding the long-term effects, advancing the prevention and treatment of traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE).

Pledging my brain is a way for me to contribute to something greater and may be the most meaningful contribution I can make in my lifetime to help those ahead. The research conducted at the brain bank to aid in the TBI crisis, prevention and management of CTE is something I admire and feel very strongly about.

There have been more than 8,000 pledges thus far with a goal of 10,000 by the end of this year. There is a crucial need for more brain pledges especially women who are underrepresented. Female brain pledges are so important because we are more susceptible to concussions and recovery is often prolonged compared to males.

This is an incredible way to bring more knowledge to concussions and CTE. To learn more about brain injury in youths and CTE, go to this guide and resource here: Youth Concussions – What to Do if Your Child Has a Concussion.

The brain bank is also in need of healthy brains to serve as controls in research so this means you can contribute and be part of the solution even if you have not sustained a brain injury.

I highly encourage anyone, athletes or non-athletes, especially those who have suffered a TBI to pledge to bring awareness to this “invisible injury” and potentially be a part of a scientific breakthrough.

I left the game I love on terms that were not my own but hopefully with my contribution, I can leave it better and safer for generations to come.

This is my legacy pledge to being part of the solution.

Take the pledge here.

Concussion Legacy Foundation Infographic

A Place Disease Cannot Touch

I am here to bring you a powerful message: a message of healing, a message of life. Right now you may feel overwhelmed by the challenges facing you. Fears get magnified, priorities get revaluated. Many of us are confronted for the very first time with our own mortality. Healing becomes the magic word. Where do we go from here?
There is a place within you that disease cannot touch, a place where you are whole and radiant with health. This is the sacred place within you where the power of Spirit, the Divine, resides. This power within can transform your life. Attune yourself to it by quieting your mind. Become receptive to its guidance by letting it speak through your intuition.
As you connect with this power you will come to understand that your physical self undergoing a disease experience is only one side of you. Your spirit, the very essence of your being, is whole; healthy, intact.
It is this power in you that will give you strength to overcome your difficulties one step at a time, to let go of preconceived ideas about your health. It will give you the courage to look at your life, heal the wounds of your past, forgive yourself and others, and let go of the anger, resentments and regrets.
It is this power in you that will help you accept yourself totally as you are: your wonderful, creative self, expressed through the gifts you bring to the world, and the limitations of your humanness.
When doubts and worries overwhelm you and trouble your heart, that power within will comfort you, giving you the ability to let go and be free in the moment.
Your focus will shift to the fullness of life; you may rediscover joys lost in the hectic process of everyday living and become grateful for all you have taken for granted.
All it requires are the two most powerful tools in the universe…willingness and belief:
Willingness and belief.
Tullia Forlani Kidde

I heard this one day last year and it resonated with me to my core. I felt it so deeply, like it was speaking directly to me. I was left in tears. I printed it and taped it to my bathroom mirror so I see it every day. “There is a place within you that disease cannot touch,” has become a mantra for me.

There are so many variables that construct our identities. After so much loss during this recovery, I have struggled with my identity and oftentimes feel consumed by my injury. I haven’t felt like myself for 28 months now and feel very lost at times. It has been so long that I don’t even know what “normal” feels like anymore.

I have been told to accept that this is my new normal and that I may not get much better than this. I have also been told that there is hope of more improvement. There are so many unknowns. My faith has been tested. There are no guarantees and letting go of the process and preconceived ideas about my recovery is something that I still struggle with.

While my spirit feels broken at times, I hold on to the hope that deep within me somewhere I am radiant with health. Having this as a reminder is something I deeply hold onto.