The Healthcare System Is Broken, Not You
Why Traditional Medicine Can’t Help You Recover From Complex Post-Concussion Syndrome
I could not have imagined how much my life was about to change when I fell off a bike and struck my head on my own driveway on April 29, 2016. My biggest concern was that my head was bleeding a lot and I might need stitches. I never lost consciousness, only felt nauseous and had a doozy of a headache. My husband took me to the emergency room where I was in and out in under two hours. I didn’t even need stitches.
The ER staff told me I had a concussion and gave me a referral for physical therapy. I knew little about concussions and thought that was an odd thing for them to do. As far as I was concerned, I just had a nasty bump on my head that would heal within a few days and I would be fine. My mind couldn’t even make the connection between bumping my head and needing physical therapy. Oh, so naïve! I needed physical therapy and a whole lot more.
As a content writer by profession, one of the earliest things I noticed was that I couldn’t see what I was writing very well. I had to blow it up to an 18-point font and turn the text bold to see it and then bring it back to normal before I delivered work to my clients. The next thing was that I felt slightly confused. At the library one day, I wondered where I was and the noises all blurred together into a single droning buzz. When I drove home, I felt I was in one of those tiny cars from the board game “Life.”
Difficulty walking and maintaining my balance came next. My left leg crossed over my right in a scissors pattern and I often felt a sensation of falling backwards when I was standing without moving. When trying to get up from a chair, gravity pulled me back down many times. It was frustrating for sure, and I soon required a walker to maintain my balance in public.
After four months of this, I scheduled an appointment with a neurologist. She asked me why I was there, seemed annoyed that I was wasting her time, and said my balance and other symptoms would “just get better.” This was my first experience of the type of attitude I would experience from medical providers many times over. She did order imaging tests that appeared normal.
With a brain injury, the structure of the brain is often fine. It’s the functioning that’s not so good. This is something I have come to believe that the traditional medical system cannot deal with at all. Brain function is not fixable with a pill or surgery. It’s a long, complicated, and involved process that simply doesn’t fit our current model of 10-minute appointments scheduled weeks or months in advance.
Involuntary Movements and Seizures
It was about nine months after my concussion when I first started having involuntary jerking of my head, flailing of my left arm, and convulsive activity. Concerned, I scheduled an appointment with a neurologist at a different clinic. He ordered an EEG for me, which naturally came back normal. This is the point where some neurologists will tell patients they have psychogenic seizures. In other words, they feel the movements must be from a psychological cause if they can’t explain them.
To his credit, this neurologist didn’t label me but did seem to think I was over-reacting since testing I had done to this point was “basically normal.” Since the EEG technician noticed all kinds of involuntary movements during my testing, the second neurologist gave me a referral to a movement disorder specialist. I didn’t go for about six months because I started to feel better.
For the entire three years since my concussion, my symptoms have always flared up in the spring and fall. This was the spring of 2017, and I did stay pretty stable until late summer/early fall that year like usual. Unfortunately, each relapse cycle was worse than the last.
Cognitive and Mental Health Issues
Things really started to deteriorate going into the fall of 2017. In addition to the problems with balance, vision, and involuntary movements, I started to have strange and confusing thoughts. When my husband was watching a TV show, for example, I would think that I was living inside of the TV and part of the show.
I had enormous difficulty with the concept of time. It seemed like my children, who are both young adults, should be about preschool age. I also frequently imagined that people who had died, especially my mother who passed in 2015, were sitting right there in the room with me. If I had a memory from my childhood, I would think that’s the era I was in at the present. I often thought it was the 1970s. Sometimes I didn’t remember my husband’s name or how we had met. I was only 49 years old and scared that I was starting some form of early dementia.
As unsettling as these incidents were, they were only temporary. I usually felt completely normal about 30 minutes later. That didn’t bode well for me in trying to get help because most providers assumed I was faking it. The physical symptoms often followed the same pattern. I can assure you that it would be impossible to fake any of my symptoms, physical or mental.
I also struggled with extreme cognitive problems starting at this time. Basically, I forgot how to think and solve problems in sequence. I would just stare at my computer screen when I was supposed to be writing content for clients. When I could work, it took me about three times as long to finish an article as it should. Talking often became labored for me as well.
First Movement Disorder Specialist
I finally followed through on the referral to the movement disorder specialist in September 2017. What a disaster that was. He walked into the room and without speaking to me or examining me first announced that I had functional neurological disorder. They previously called this conversion disorder, an idea from the time of Freud that people can convert psychological symptoms into physical ones. The newer term supposedly removes the need for some trauma to drive the physical symptoms.
My next referral was for neuropsychological testing at the University of Minnesota. One of the tester’s first questions was whether I was trying to get on disability. I was shocked since that never crossed my mind. I’m self-employed, like what I do, and wanted to get back to doing it.
Although the testing showed areas of severe cognitive decline, the psychiatrist who wrote the report decided that my issues were almost entirely psychiatric. Her solution was to put me on anti-psychotic drugs and send me to therapy. I can hardly imagine how taking drugs for so-called schizophrenia would have messed me up.
This report remains a permanent part of my medical record. The next movement disorder specialist I saw in May 2018 had read it before my appointment even though I never submitted it or gave my authorization to do so.
Functional Brain Imaging
I was so excited in the spring of 2018 to learn of functional imaging that could pick up brain abnormalities that an MRI or CT cannot find. It measured the function of the brain and not the structure. We flew from Minnesota to Colorado to get the SPECT imaging performed. It confirmed in words and pictures that my brain was really messed up.
Although it wasn’t great news, I was hopeful this would finally prove I had real symptoms and not psychological problems. That hope was quickly dashed. The second movement disorder specialist I referenced in the last section didn’t know how to read the report and didn’t want to give it any credence anyway.
Emergency Room Disaster
On May 13, 2018, I started seizing uncontrollably at home. My family called an ambulance and that’s when the real trouble started. The ambulance crew took it upon themselves to decide I was faking seizures and refusing to talk on purpose. Although I could hear everything going on around me, I was dizzy, confused, and couldn’t speak. I could hear one of the attendants calling into to our local hospital saying they were bringing in a faker who refused to speak and isn’t that fun. Another attendant told me “you can open your eyes now” when we got to the ER.
Once in my room, I could hear the two nurses laughing and gossiping about me. I overheard one say that I only have symptoms when someone is looking at me. All I could do was lie there and feel humiliated until my symptoms started to abate and I could speak again. At that point I told them I could hear them. One decided to yell at and belittle me while the other stood there wide-eyed and shocked that I heard them.
Both nurses changed their treatment towards me after the doctor came in and I told him I wanted the contact information for a patient advocate because I would be filing a complaint. However, I went far beyond that. I wrote to the ambulance company, the president of the hospital, and the president of the entire health system. The reply I received from the hospital is below. It made me feel good that they educated their staff on symptoms of brain injury. Sadly, I know from many other people with brain injury I have spoken to that my humiliating experience was far from unique.
It was at this point that I decided traditional medicine could do nothing for me. I haven’t been back since for any reason.
Chiropractic Neurology and Other Treatments That Did Actually Help
I learned of a clinic called Minnesota Functional Neurology Center that dealt with people like me (and far worse) all the time. It had amazing success stories but was not covered by insurance. My husband and I were so desperate for me to get better that we took money from his 401(k) to pay for it. I signed up for the weeklong intensive program called ICON for the first week of June 2018. The results were instant and amazing. I could walk unaided, had no involuntary movement, clear thinking, improved visual clarity, and much more.
My amazing recovery had me absolutely on Cloud 9 and more energetic than I had felt in years. Unfortunately, my mental health issues stemming from my concussion became significant the winter of 2018-2019 and the severe cold of Minnesota didn’t help. I became deeply depressed, anxious, unmotivated, and isolated, not taking care of myself at all. In fact, I rarely left the house for a few months.
All of the old symptoms were back full force by spring, only worse. I was having full-blown seizures every day. Desperate and at the absolute end of my rope, I returned to Minnesota Functional Neurology for treatment. A five-minute treatment with a wearable photo biomodulation device stopped my seizures one day later. I now own one of these units myself and use it for 20 minutes each morning. It is currently spring and I am completely symptom-free, including emotional symptoms.
I have also had physical therapy, neuro-ophthalmologic vision therapy, wear prism glasses with a light blocker, and wear special glasses at night for driving. Before that, I couldn’t drive at night because the glare from headlights and stoplights made me convulse. Brain supplements, going for daily walks, and better nutrition help as well.
This is Only an Overview
Although I have just written over 2,000 words, it’s only an overview for a series I plan to write about post-concussion syndrome and recovery, especially when it gets long and complex. Not everyone recovers in the few weeks to months that doctors say they’re supposed to. I will delve more into symptoms and treatments, but for now just wanted to tell my story and offer hope for others still suffering who may have received the message that they’re crazy or that they just have to learn to live with the brain damage. I am living proof that neither one of these things are true.
Other articles in my brain injury series:
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
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© 2019 Lisa Kroulik