A bike accident, in 2001, led to my first traumatic brain injury. Then, in April 2015, a driver made an illegal turn in front of my car and I ran into her side. I may have briefly lost consciousness, just a few seconds, but it was enough to re-ignite all the previous brain injury symptoms, setting me way back in my recovery. Since then, in some ways, I’ve had to start over. It’s not as bad, but it’s been really hard and scary. I often feel like I’m losing my mind.
TBI vs. concussion
The brain is a tender organ suspended in fluid inside the skull. Any blow to the head or sudden violent movement caused by an uncushioned external force can easily cause the brain to bounce around inside the skull, often resulting in a change of mental status. A person can recover fully from this stunned state relatively quickly. This is what we call a concussion. For the more violent concussions, such as the type I experienced, we reserve the term traumatic brain injury (TBI).
What distinguishes a concussion from a TBI is the difference between short-term issues that completely resolve themselves vs. a broader spectrum and deeper set of symptoms and challenges that last longer — for weeks, months, years or a lifetime.
March is Brain Injury Awareness month, and there’s been a lot in the news about concussions lately—even a movie, Concussion, starring Will Smith. Understanding TBI is important. People with head injuries do not show clear signals of their injury, as patients with broken arms or legs do, although they may appear moody, depressed, bi-polar, confused, angry, forgetful or just plain weird. The hidden nature of this injury and the public’s general lack of knowledge about brain injury and its symptoms have led TBI patients to be dismissed, or labeled mentally ill.
In a state where many of us live active lifestyles, we have an greater chance of knowing (or being) someone who has experienced a head injury. More than 40% of TBIs result from a fall or sports injury. Car accidents cause 14%, 10% domestic violence and assault, and the remainder from unintentional striking or other sources. Understanding how to deal with the repercussions of such an injury can be life saving.
Symptoms aren’t always easy to recognize. They can be subtle and sometimes may not surface until 48-72 hours after an injury. Since head injuries can be present with other more obvious or emergent injuries, such as broken bones or bleeding gashes, they may be overlooked.
After two weeks in ICU, I was discharged from the hospital and sent home with muscle relaxers, Oxycontin and Dilaudid for pain and no follow-up instructions. I didn’t know how underprepared I was to handle my situation. When I visited the pain management doctor about my crippling pain, I got more pills. When I followed up with the neurosurgeon, he dismissed me and said I should feel better in a few months.
In layman’s terms, if you have a concussion, you rattled your brain; but if you have a TBI, the effects will be more pronounced and longer lasting. Dr. Gregory Hawryluk, Director of Neurosurgical Critical Care at University of Utah Healthcare says a hard impact with significant loss of consciousness (longer than a minute) and accompanied by symptoms that don’t resolve quickly may indicate a more serious brain injury. However, it’s important that both concussions and TBI be taken equally seriously.
Locally, we have excellent centers at the University of Utah Hospital, Intermountain Healthcare and Primary Children’s Medical Center. (See Resources.)
Rest, for both the brain and the body, is a critical phase for anyone recovering from brain trauma. This means no television, internet, video games, music, reading, texting, phone calls or email. It means staying in a darkened room to reduce sensory stimulation. Only when the brain is completely at rest can it recover. Resting also includes significantly limiting physical activity; an increase in heart rate can worsen symptoms. In the case of a concussion, staying home from work or school for one or two days may be sufficient, but allow for longer if necessary. Some doctors recommend at least a week, believing that less time than this can slow recovery.
Over-the-counter medications such as aspirin, ibuprofen, Advil, Motrin and Aleve should be avoided as they may increase the risk of bleeding (check with a doctor before taking any pain medication to relieve a headache). In the later stages of recovery other daily considerations become important. Hydration is critical, as the brain is approximately 75% water and water is the brain’s electrical conductor—it connects signals and thoughts and other brain processes. Alcohol should also be avoided for at least a year after a head injury. It is also important to know that recovery from a head injury (concussion or TBI) is different for every single person.
Recovery, for me, was slow and is still ongoing. After the hospital, I was in bed or the easy chair for months, didn’t drive for nearly a year and then only very short distances. I didn’t drink alcohol for years and still don’t drink that much, and I’m still highly sensitive to light, sound and energy.
As I worked through my own recovery, I found myself experiencing many of the symptoms common to head injuries. I dealt with fatigue, headaches, lightheadedness and balance issues. The ringing in my ears that started after the accident is very loud, all the time, and makes me crazy. I have poor coordination. I’m forgetful and compulsive. I need sleep, lots of sleep. I’m moody, anxious, depressed, overwhelmed and easily startled. I get confused. I get lost. I feel the slowness in my thinking, the difficulty of making decisions. I’m grateful I don’t suffer from seizures.
It can also be useful to seek assistance in recovery from less traditional sources. I found Feldenkrais* (see accompanying article by Dan Schmidt) useful. It helped a lot with balance, brought peace and was supportive. Sometimes I would get emotional during my sessions and the woman I worked with was present and kind. That meant everything. Yoga was much harder for me—it required a lot of balance, which I didn’t have. Plus, classes and people were, and still are, difficult for me — my senses overload quickly.
A physical therapist can help with balance, whereas a cognitive rehabilitation therapist can help with practical strategies for success—teaching patients how to dial down overwhelming stimuli (wear a hat, sunglasses and earplugs) and to regain organizational skills. Working with a neurologist can help determine where exactly in the brain the injury exists, which can help with treatment plans. A pain management neurologist can help if a brain injury patient is experiencing significant pain. There are occupational therapists, psychologists to help manage frustration, isolation and depression, speech pathologists and other specialists.
Behavioral and social changes
Perhaps as important as professional help is receiving support from friends and family. Individuals with head injuries often feel alone and isolated by their symptoms and by the ongoing difficulty of daily life management. Questions such as “how are you doing?” or “describe how you are feeling” can be hard for people with brain injuries to clearly or concisely answer. It is often extremely difficult to communicate their experiences to others.
One question that comes up a lot: Why does one person become mean and surly after a head injury and another become sweet? I remember the day the doctors told my mother that it’s not uncommon for people with brain injuries to become especially inappropriate, foul-mouthed and cantankerous. Oh, how I wished that wouldn’t happen to me. It didn’t. I used to think it was luck and I was grateful for my personal outcome.
Turns out that these kinds of behavior changes have to do with the location of the brain injury, as well as the severity. The frontal lobe, for example, regulates the ability to make choices. Patients with frontal lobe trauma commonly experience depression, decreased motivation, personality changes and changes in executive functions such as an inability to plan for the future (even a day ahead), judgment, decision-making skills, attention span and inhibition.
I lost some close friends because of the injury—they didn’t understand and I didn’t know how to explain it to them. Early on, I would frequently get lost and needed a lot of support. One longtime BFF, whose wedding I was supposed to go to in Napa Valley, didn’t understand why I was hoping to share a room. My reasons included cost—brain injuries drain the bank account; and logistical support—I couldn’t drive and really couldn’t travel unassisted. I tried to explain, but since I seemed okay outwardly she didn’t understand. Often it’s when I talk to other people with brain injuries that I feel really understood.
Research is finding that multiple concussions can have cumulative effects. This is especially true when discussing potentially high-impact sports such as football, boxing, rugby, ice hockey, soccer, wrestling, motocross and rodeo riders, where many players sustain multiple traumatic brain injuries that may lead to Chronic Traumatic Encephalopathy (CTE). The condition was first discovered in the brain of NFL Hall of Famer Mike Webster by Dr. Bennet Omalu in 2002. It was previously thought to have existed primarily in boxers, and was referred to as dementia pugilistica. Documentation from cases of cumulative concussions indicates that patients frequently experience long-term damage including early-onset dementia, Parkinson’s and ALS (Lou Gehrig’s disease), ultimately progressing to CTE.
Prevention, as with many things, is the best medicine. Treat your body with respect, advises Dr. Hawryluk. When participating in outdoor activities, wear a helmet. Helmets definitely save lives. Someone who hits his head while wearing a helmet may still sustain a head injury, but the presence of a helmet will reduce the severity of the injury. If you do suspect a brain injury, follow through with correct procedures and treatment. Untreated, or poorly treated, concussions can cause serious long-term effects that could have been easily avoided with immediate and appropriate attention.
About 10 years after the bike accident I found out that my case had almost certainly been mishandled. Had the hospital life-flighted me to a nearby hospital with a trauma unit, the doctors would have operated to relieve the pressure in my skull and would have kept me for in-patient rehab. Those steps could have dramatically altered my outcome and the symptoms would likely be significantly less severe.
Through the recovery process it has been important to remind myself of my sanity. Yes, I sustained a life-changing injury that altered my brain, its connections and its chemistry, but I’m not crazy.
My greatest pain has been a decrease in my ability to experience unabashed joy. I used to know what fun was— hiking, friends, dancing, traveling—and while I enjoy those things still, they are also huge projects. I go along and try to look like I’m keeping it together while, on the inside, I’m falling apart.
Despite these challenges, my ability to function has dramatically improved over the last 15 years and continues to this day. I’ve found some gifts that I am grateful for. I feel more present. I feel more compassionate with others. I have infinitely more patience because I’ve experienced both sides. I am grateful when people show me kindness. And when someone seems a bit strange, I often see myself in them and know that a little empathy will go a long way.
Caring for TBI caregivers
The life of a patient who sustains a traumatic brain injury changes in an instant. This is also true for those assuming a caregiving role to someone with a TBI. While patients need support, so do caregivers.
Greg Nordfelt is a TBI survivor and a Volunteer Mentor at Intermountain Medical Center who, together with his wife Laura, created a monthly Caregiver Support Group. Because of the myriad changes a TBI patient may go through, it is not uncommon for married TBI patients to get divorced due to the unique and overwhelming challenges thrust upon caregivers. With a lack of understanding and a lack of care, spouses are commonly unable to deal with their newly found roles and responsibilities. It’s not an insurmountable challenge, but for a successful outcome, support of both the patient and the caregiver is critical. For anyone in the position of caregiving for a person recovering from a head injury, there is support out there.
To learn more, or to attend a support group meeting at IMC, contact Laura Nordfelt at firstname.lastname@example.org. For additional information check out their survivor support group Facebook page, Caring For The TBI Caregiver.
If you suspect you’ve sustained a head injury
Stop what you are doing immediately. If you’re playing a sport, don’t go back in the game.
Next, apply basic ABCDE medical principals: Check the patient’s Airway (for obstructions), Breathing (determine the respiratory rate), Circulation (pulse rate), Disability (level of consciousness) and Exposure (externals signs of trauma such as bleeding or bruising).
A common misconception is that you must be knocked out to sustain a concussion or a TBI. If there’s any doubt as to the severity of an injury involving the head, it is better to assume the worst and err on the side of caution. Call an ambulance and head to a hospital with trauma and head injury services.
Lori Mertz is the author of Successful Surgery and Healing: A Practical Guide for Patients, Caregivers and Advocates (2015). She is CATALYST Magazine’s special projects manager. LoriMertz.com