I apologize for not writing every day, I had a Hospital visit and a ER visit for a concussion and loss of memory. The biggest instruction was not having stimulation, which includes the TV, Computer, cell phone.
I fell on ceramic Tile head first an I had no idea what I was in store for. I have never had a concussion before, but I could feel my brain swelling, I knew enough to know something wasn’t right, I was forgetting peoples names, what I had just done. Or done that morning,
If you do have a fall, its important to get your head checked out, make sure you are ok. Its going on 3 weeks and I still have my loss of memory I just have to make sure it comes back so I am listening to the Dr by not stimulation of my brain.
So far I’ve written a lot about concussions, my various symptoms and their causes. Now I’d like to share the personal parts of my story that got me to this point – a twenty-three year old Yale graduate living at home with chronic and debilitating pain.
I never thought I’d write a blog about my concussion. In fact, it was the last thing I wanted to do. For a long time I wanted nothing to do with this injury. I wanted no part in sharing my story, being a resource for others, or advocating for awareness and change. All I wanted was to get better and never hear the word ‘concussion’ again. Over time, though, I realized I had important information to share, and that maybe writing, connecting with others and advocating for this cause could, in its own small way, be a form of healing for me too.
Here is more of my story:
Way Too Many Doctors
Before I found the right doctors who were actually qualified to treat my injury (which, I will again point out, took me over a year and a half), I sought help from so many other doctors.
Trust me, I wasn’t complacent when it came to my recovery. In fact, I couldn’t have been more proactive or motivated to get better. I followed every order given by every doctor. The first order, of course, was cognitive rest.
So, it all began by cocooning in the darkness of my room with nothing to do but listen to Jim Dale read the Harry Potter audiobook series aloud. Because I was advised not to read, watch TV or use the computer, audiobooks were a nice way to pass time without inhibiting recovery. Yet, after completing the entire Harry Potter series on audiobook, it soon became clear that I was not recovering in a timely manner.
Each night I’d go to bed hopeful that I’d wake up and feel like myself again, blissfully eager and ready to return to the ice and finish off the last few months of my hockey career at Yale.
But each morning I’d wake and slowly sit up in my bed only to be met with the ominous realization that my headache was still very present, my vision still fuzzy and my ears still ringing. This, of course, meant another day in the dark listening to Jim Dale’s voice.
I will never forget when the Sports Medicine doctor at Yale told me with 100% certainty that I’d be better in time for my team’s league games in January (a mere three weeks away at the time). So when this wasn’t happening, when the protocol he felt so sure of wasn’t working, I started scrambling to find more help.
I began reaching out to everyone I knew who had a concussion and sought their advice. What treatment worked for them? How long did it take them to get better? What tips did they have to help me speed up my recovery?
All in all, since suffering my concussion I have seen over forty different health professionals spread across twenty-one towns, five states and two countries.
Neurologists, functional neurologists, neuro-opthamologists, neuro-optomotrists, psychologists, psychiatrists, chiropractors, osteopaths, naturopaths, acupuncturists, massage therapists, physical therapists, physical medicine and rehabilitation doctors, vestibular doctors, ER , jpdoctors, primary care doctors and sports medicine doctors.
I’ve seen them all. Visits with these doctors adds up to well over 200 different appointments (and counting). Yet, none of these numbers are as startling as this: it took me 528 days to finally find the two doctors who had the expertise and knowledge to adequately treat my concussion.
The 18 months leading up to this were unquestionably the hardest of my life. I felt like a chicken running around with its head cut off. I was desperately trying to find the help I needed to get well and every time I came up far too short.
Along with the standard Post-Concussion Syndrome diagnosis, I was told I had all sorts of things wrong with me: Postural Orthostatic Tachycardia Syndrome, Tullio Phenomenon, Labyrinthine Contusion, Post-Trauma Vision Syndrome, Barre-Lieu Syndrome, and even Post Traumatic Stress Disorder.
I could go into detail about what all of those diagnoses mean, but it isn’t important because I don’t actually have any of them (and never did). What I do have (as I mentioned in my postlast week) is structural damage to my neck and the base of my skull, which keeps my nervous system in a heightened state and continually sends intense referral pain signals to the areas surrounding my brain.
I will continue to write in more detail about this in the coming weeks, but right now, I think it’s important to highlight how destructive it can be when patients are misdiagnosed and left frantically searching for help.
Bad Advice After Graduation
Even though I had constant headaches, vision issues and tinnitus, I was able to graduate (which I couldn’t have done if it wasn’t for the support system Yale put in place for me, i.e. extra time, note takers, and accommodating professors). However, that final semester took a heavy toll on my heath, and by the time I graduated I was dying to get home and spend time in bed recovering.
Once home, I continued to devote a large majority of my time researching concussions and treatment modalities, all while managing the pressures that inevitably come after graduation by trying to find a job.
Fortunately, over the summer I managed to secure a great full-time job at a private equity-consulting firm in Boston. Unfortunately, it happened before I was fully recovered.
So I delayed my start date in order to get evaluated at a brain rehab facility in Atlanta. This facility met all of the criteria for a place that could really help me. It had a smart, approachable and professional staff of doctors. It had extensive and thorough diagnostic testing, state of the art technologies and treatment modalities. And it had a long history of effectively treating concussions and various brain injuries.
I so badly wanted this to be the place that helped me get my life back.
I spent five straight days at this facility getting treatment for Postural Orthostatic Tachycardia Syndrome (POTS). The doctors in Atlanta claimed that this syndrome often occurs after an individual suffers a concussion, and in order to treat the concussion this needed to be treated as well. POTS is a condition that affects your autonomic nervous system and involves an abnormal regulation of your heartbeat. POTS’ symptoms are influenced by gravity: when an individual goes from laying down to standing, their heartbeat rapidly increases more than 30 beats per minute, inducing headaches, light-headedness, dizziness and more.
I will admit this diagnoses was not a bad guess considering the gravity component associated with it. As I mentioned last week, my headaches are driven entirely by gravity and I get relief when I lay down just as patients suffering from POTS usually do.
Either way, my treatments began with therapy on a tilt table. This involved lying on a table that electronically changed positions from horizontal to vertical as my brain was being stimulated through different exercises. It is actually a great method for treating patients with POTS because it works to normalize your heart rate, but unsurprisingly, it didn’t do anything for me. I was also given a variety of eye exercises to re-acclimate my vestibular systemand create plasticity within my brain.
I did everything they told me to do while relentlessly drilling my doctor with questions about my injury, my recovery timeline and recommendations moving forward.
My doctor was certain I would make a full recovery in one month’s time. This was great news because it would give me just enough time to focus on healing before I started my consulting job. He assured me that working a full-time job would not make things worse even if my symptoms weren’t fully resolved.
He also told me to stop seeing doctors and, above all else, avoid getting any “inappropriate” treatment done on my neck. I kept telling him I believed my symptoms were being generated from my neck, and he kept insisting that I was wrong.
Nonetheless, I took his advice and headed home feeling fairly optimistic, despite the fact that I didn’t feel any better than before I got there. This hearty optimism very quickly began to dissipate, as each day with no improvement was also another day closer to when I would begin work.
Instead of experiencing the long-overdue relief I had grown accustomed to daydreaming about, I was met with the heart-breaking realization that I simply wasn’t recovering. Except by that point I was out of time and options – I had to start my job in October. All I could do was hope that my symptoms would remain somewhat tolerable and eventually resolve on their own.
FREE WEBINAR: Many concussion patients experience vestibular symptoms, such as prolonged dizziness, fatigue, headaches, and difficulty concentrating. VEDA will be hosting a webinar Sept. 16th during Balance Awareness Week where we will learn about concussions and their impacts on the vestibular system. Just in time for back to school, this webinar is geared toward parents, teachers, and school administrators who want to prevent concussions in youth who participate in sports and other impactful activities.
There is limited space for the live webinar, but a recording will be available afterward. Please share with anyone you think might be interested.
After reading the past articles, I feel like I have everything the New Jersey Functional Neurology Center helps patients with. I had no idea nor has any Dr in Reno, CA, Salt Lake City mentioned this center is available. It’s amazing to me how ego’s set in and If they can’t cure you no one can. I have not been to the Center but after reading the web page, and having a few short e mails with the DR, I feel like there is hope for all of us out there. Dr Scopelliti offers hope for all different area’s and I feel lucky to have found him. Now he is stuck with me! You can sign up for e mails at the bottom of the article, but I also will be sharing his information he has offered to help others out there living the world of Invisible Illness’s.
Treatment For Patients Suffering With Vertigo, Dizziness, Imbalance, Dystonia, Traumatic Brain Injury/Concussion, (TBI), ADD ADHD and other Neurologic and Neurobehavioral Disorders
Vertigo, although most commonly associated with inner ear disorders, has several causes including both vestibular, (inner ear), as well as central, (brain based). Dizziness and dysequilibrium, (imbalance), are often seen as secondary effects of vertigo as well, associated with subtle changes in the brain, which we see in those afflicted with vertigo and dizziness. Relief of vertigo symptoms depends on determining and eliminating the cause. Vertigo, dizziness and imbalance may be caused by a more serious condition that many health care providers can miss since they don’t treat neurologic and/or vestibular conditions on a day-to-day basis. In the past, the standard medical treatment for symptoms of dizziness was the prescription of certain vestibular suppressant medications, such as Meclizine. In the last ten years, the understanding of brain function has exploded. The nineties have been referred to as “The Decade of the Brain.” Brain based understanding as well as understanding of vestibular dysfunction, (vertigo and dizziness, presyncope, etc), has yielded extensive new therapies and treatments for resultant conditions, such as vertigo and dizziness, dystonia, as well as a multitude of behavioral disorders, such as attention deficit disorder, (ADD ADHD), dyslexia, etc. It is now known that brain/vestibular dysfunction is is also intimately related to many conditions, including learning disabilities such as ADD ADHD, phobias, panic attacks and anxiety, scoliosis, movement disorders, including dystonia, Parkinson’s, Mild Cognitive Impairment, essential tremors, etc., and brain injury, (TBI, MTBI), as well as vertigo symptoms and symptoms of dizziness, disequilibrium and other disorders of imbalance, which predispose increased and premature fall risk associated with imbalance.
The resultant development of new protocols in diagnosis and treatment primarily of brain based disorders, such as vertigo and dizziness, dystonia, etc., continue to be developed today, and many focus on accepted understanding of central control mechanisms of the brain involved in movement, balance, and postural stability. Our unique approach to treatment incorporates functional integrative neurological and neurodevelopmental rehabilitation. Dr. Scopelliti credits his success with these more exotic neurologic and neuro-otologic conditions to his in-depth diagnosis and conservative treatment protocols which diagnose the true cause of the patient’s symptoms, (like vertigo and dizziness), then treat properly to provide as much long term relief as possible. Our brain based treatments provide brain fitness peak performance by exploiting concepts of neuroplasticity which were concluded to be possible in the 90’s. Neuroplasticity is a concept of neuronal regrowth and replication, which for centuries has been thought to be impossible. We now know that it is not only possible, but that it is in fact how the brain works.
Because of the high level of specialization and success of our practice, we routinely see patients from out of town and from out of state suffering with untreated complex brain based disorders such as vertigo, dizziness, dysequilibrium, dystonia and traumatic brain injury, (TBI). If you are coming to see us from out of state, you can find a local hotel to make arrangements at by keying in the phrase “hotels in Long Branch NJ” into Google map search box, or, your favorite mapping application. You can find the local map of our office on our Directions page. This will bring up several local hotels and their contact information. We typically advocate spending the week as you will be seeing the doctor daily. Please call our office for any assistance which you may need regarding a hotel stay or transportation.
The following are representative of the types of conditions for which we routinely see patients in our office:
“Learn To Live With it” or, “Your Problem Is In Your Head” Patients
This is the vast majority of our practice, comprised of patients who have been to specialist after specialist, had lots of tests, are not getting better, and are told simply to “Learn To Live With it” or, “Your Problem Is In Your Head”.
Imbalance And Balance Disorders
Vertigo and Dizziness, Pre-syncope, Balance Loss or Dysequilibrium, Fall Risk.
Concussion, or traumatic brain injury is common among contact sports participants. Concussion has been defined as a condition in which there is a traumatically induced alteration in mental status, with or without an associated loss of consciousness. In reviewing the scope of symptoms of actual concussion patients, further specificity can be discussed. Dizziness or vertigo is an erroneous perception of self motion or perception of environmental motion and of gravitational orientation. Most patients who have suffered a concussion experience this phenomena of symptomatology. Typically this perception is created through a mismatch between the vestibular, visual and proprioceptive, (sensation of the earth under your feet), systems. Because of the overlap of these systems, they each tend to compensate for deficiencies of the others by design. This is why when the lights suddenly go out, or you suddenly step onto a soft spongy surface such as wet sod from a hard surface such as concrete, the normal brain can quickly compensate by changing between these three systems to prevent falling. TBI does not produce a specific disease entity, rather, it causes a syndrome of mismatches of the stabilizing systems described above, in addition to headache and other symptoms. There is no evidence that medication improves recovery after concussion. Further, research has found that overuse of analgesics following injury may exacerbate concussion-related headaches or make them chronic. The most common treatment recommendations for concussion are rest. But this too has not met with satisfactory results as concussion symptoms commonly continue or worsen. An athlete who has a history of one or more concussions is at greater risk for being diagnosed with another concussion. The first ten days following a concussion appear to be the greatest risk for being diagnosed with another concussion. Second concussions are bad for several reasons. The brain has not yet recovered from the first concussion, so the damage becomes cumulative. Second impact syndromes are often the cause of fatalities in concussions, sports related, (adolescent and pro), or other causes. Although rest initially following a concussion is often advisable, it is not solely the best treatment for concussions. Our office uses the most contemporary and proactive treatment methods in the management of concussion brain injuries. We do this by directly affecting the aforementioned systems of balance for as long as these systems continue to be mismatched, there can be no recovery, and as long as these systems remain mismatched, they will perseverate the other concomitant symptoms associated with concussion and traumatic brain injury. More information on traumatic brain injury and treatment can be found on my website at www.dcneuro.net.
The intent of this site is to help others through sharing information. Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.