Survivors in the Spotlight – TBI Classification Workshop Features Testimonials from Patients with Lived Experience

By Lauren Moore, Marketing and Communications Manager, BIAA

As part of the TBI Classification and Nomenclature Workshop held last month at the National Institute of Health, several individuals who have lived experience with traumatic brain injury (TBI) were invited to participate in a panel discussion to offer their personal perspectives on the current TBI classification system. Although each panelist had a unique story and experience with brain injury, with the severity of the initial injury varying greatly from person to person, a common thread amongst every participant was that the current classification system did not accurately reflect their own brain injury journey.

‘Mild’ Diagnosis Works Against Patients

Lindsay Simpson shared that she was diagnosed with a mild TBI – her eighth brain injury – by an EMT after a 40-pound beam fell on her head while on the job as a sports reporter in 2018. “Because it was ‘mild’ the initial response to my injury was treated with the same amount of urgency. I never went to the ER, was never properly evaluated for bleeding or swelling, and it was days before I followed up with a doctor,” she shared. “But over the past nearly six years, it is clear that my brain injury was anything but mild.”

Over the weeks and months that followed the initial injury, more symptoms began to present themselves – many of which have yet to resolve.

“Being diagnosed with a mild concussion has created substantial challenges in my recovery,” Simpson said. “I have constantly had to fight to be taken seriously by friends, and family, and doctors, and this misnamed mild categorization was weaponized against me as I had to fight it during contentious worker’s comp and litigation processes. It was used to try to malign my character, to prove that I was faking or malingering, and caused a mountain of stress that inhibited my ability to simply focus on recovery.”

The diagnosis, she added, did not take into account her seven prior brain injuries, nor the severity of the most recent injury’s impact. And because her injury was categorized as mild, it was never recommended that she receive inpatient treatment – although several of her doctors have concluded, in hindsight, that she should have been in an acute care facility.

“An appropriate diagnosis should have taken into consideration the type of impact that I suffered, my substantial history of traumatic brain injuries, and the continued decline I showed in the months following the accident. A proper classification would cause the responding providers to make sure I was under immediate medical observation, and given me applicable short and long-term treatment plans by the medical care team,” she said.

Nearly six years after her most recent brain injury, Simpson been unable to return to work, and lives with cognitive deficiencies; eye convergence issues; chronic dizziness, headaches, fatigue, and nausea; loss of sensation in her hands, right leg, and right foot; hearing loss and auditory processing challenges; and a stutter.

Melanie Wienhoven had a similar experience. It took her six years to recover from a TBI sustained in a bicycling accident during which she never experienced a blow to the head or loss of consciousness. She was diagnosed with a mild concussion at the hospital – “the mildest of the mild traumatic brain injuries,” she said.

As she started to develop symptoms that left her fatigued and unable to resume the life she had been living prior to her injury, that diagnosis worked against her. She was told by multiple different neurologists that there was nothing wrong with her, that she was manifesting her symptoms with her mind, and that she had to accept the consequences of her accident and learn to live with her symptoms. “I felt like I overstepped by seeking care over time, like I was a nuisance who was making doctors uncomfortable. I can safely say, the doctors that I saw over time took hope for recovery away, and I fell into depression,” she said.

However, she pointed out, hope for recovery is possible – and believing in that hope is critical. She shared her thoughts on what a new TBI classification system could look like – a system that leaves room for the unknown, because the brain “is an amazing organ and is capable of so much more than we humans – even doctors – are able to understand.”

‘Severe’ Patients Subvert Expectations

On the other end of the spectrum was Scott Hamilton, who was brought to the hospital in a coma after a Vespa accident in San Francisco.

“Most of the doctors and nurses who diagnosed my severe TBI 18 years ago could not imagine that I would be alive, let alone walking and talking on this stage today,” he said. His wife was told by two doctors that he would not survive the night – he had a GCS score of 3, right frontal contusion, subdural hematoma, and nick in his brain stem – and that given the severity of his injury, that was better than his surviving.

“According to the stats, I had about a one in 10 chance of coming out of my coma, and about a one in 20 chance of being able to talk, live independently, and not become a drug addict or alcoholic if I did live,” he said.

He came out of his coma 12 days later, only to face a battle with his insurance to cover his acute rehab. Although he won that battle, he did not receive any post-acute care after leaving rehab: no check-ins, no assessments, no updates on how he would be classified or characterized. It was only due to the good fortune of having a neurosurgeon who gave him his cell phone number – Dr. Geoffrey Manley, a member of the Steering Committee leading the charge to reclassify TBI – that Hamilton was able to receive guidance and help when things got bad.

“GCS oversimplified, and ‘severe’ reinforced the pessimism and resignation that would have led to life support being pulled, or bed confinement instead of rehab,” Hamilton said. “In my case, my wife and Geoff Manley were the only two people in the hospital who thought that I was worth fussing over, that there was anything worth doing.”

TBI survivor Lindsay Caron shared that, like Hamilton, her family was told that she wouldn’t survive after she was hit by an SVU while cycling in 2021. “I think that’s wrong – you should shower patients with love and optimism,” she said. Her injury was also classified as severe – she had a GCS score of 3, was placed in a medically-induced coma for several weeks, and required multiple brain surgeries.

And while she lives with several side effects from that injury, including difficulty with executive functioning, short-term memory impairments, anosmia, and facial numbness, as well as the emotional impact of being unable to resume activities that previously brought her joy and were part of her identity, she disproved her doctors’ initial prognosis. “I function way, way, way better than anyone anticipated. I wasn’t supposed to survive, I wasn’t supposed to walk again,” she said, adding that she is able to live independently and has had the opportunity to travel internationally on multiple occasions.

The current classification system of “mild, moderate, and severe” promotes the idea that brain injuries are a hierarchy, Simpson said, adding that it boxes patients into linear, compartmentalized categories that, ultimately, are the antithesis of what a brain injury is. “We need to move away from something that resembles a ranking system, and something that categorizes people in more appropriate, applicable terms,” she explained.

John Del Cecato, who was diagnosed with a severe TBI in 2021 following a scooter accident, said health care professionals would ask him questions about how he was feeling based on his scans, rather than how he was feeling that day, or that week. If the providers he was seeing had put more emphasis on his current state, they might have been able to examine the depression or the anosmia he later developed.

“I am not an expert in any way, but in my amateur view, if we change the way we label TBI, moving away from the severity of the injury when you enter the ICU and towards a metric like the health of the survivor at discharge, or the speed of the survivor’s recovery … that kind of a shift, in my view, would avoid putting medical professionals and patients in a position where they’re so focused on the life and death stuff, that they miss the quality of life stuff.”

Testimonials ‘Remind Us Why We’re Here’

Steering committee member Dr. Andrew Maas, emeritus professor of neurosurgery at Antwerp University Hospital in Belgium, said the testimonials that the people with lived experience shared “reminded all of us why we are here, and what the reasons are that we want to work towards a new approach to classification of TBI.” He added, “It set the paces for the whole meeting, and got everyone inspired to do their best.”

Dr. Michael McCrea, steering committee member and director of the Brain Injury Research Program at the Medical College of Wisconsin, commented on the “palpable bias” invoked by the “mild, moderate, severe” labeling. “We saw the impact on access to care, eligibility for benefits, communication,” he said. “These individuals, our patients, have to not only overcome the effects of their traumatic brain injury on their life function, they have to overcome the core systems we have in place to take care of them. And we saw on display, the human will it sometimes takes to come out better on the other side. … We must do better, and we will do better, with the valued input of our patients and our persons with lived experience.”

“‘Severe TBI’ is a term that reinforces resignation and the ignorance of the long-term acceptable and possible outcomes that are possible. ‘Mild TBI’ is a term that promotes denial about the symptoms that the majority endure for severely long periods, with big challenges and bad consequences.” – Scott Hamilton, TBI Survivor

“When you’re having to fight to be believed at every turn, the emotional toll that it takes absolutely hinders your ability to heal.” – Lindsay Simpson, TBI Survivor

“Concussions are often misunderstood, misattributed, and untreated. The chronic effects of a so-called mild TBI remain poorly known to most doctors.” – Melanie Wienhoven, TBI Survivor

“When I met with a variety of health professionals, they saw the severe traumatic brain injury diagnosis and the early scans, and they asked me how I was feeling based on that, rather than saying, ‘How did you feel last week? How did you feel today?’ And those kind of questions might have shifted the conversation.” – John Del Cecato, TBI Survivor

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This article originally appeared in Volume 18, Issue 1 of THE Challenge! published in 2024.