A personal story by Carolyn McCormack, TBI Patient in Bozeman, Montana
I am a married 39-year old mother of three and a successful business owner. In May 2004, I was involved in a terrible car accident, in which the car I was driving was struck from the rear. My car collapsed around me and the trunk of the car wrapped around my head. I was taken to the emergency room by ambulance with severe head pain and lower back pain. They looked at me, x-rayed my neck, took a CT of my head and told me to go home. That was the last thing I remembered until a week later.
My husband took the week off to take care of the children and me. As soon as I could move, I dragged myself out of bed and went back to work. When it was apparent I wasn't getting better, my family doctor referred me for physical therapy. Slowly my back began to get better, but I noticed that my headaches weren't and I kept forgetting important things. I was in a constant state of confusion. Also, my work productivity slowed and I was short with people. I went back to my family doctor. This time he referred me to an ophthalmologist who diagnosed me with Post Concussive Syndrome. In the meantime, my chiropractor suggested I see a neurologist. The neurologist confirmed I had a head injury but couldn't determine the extent until tests were completed. By this time it was six months post injury. After a variety of experts and tests, the diagnosis was that my condition was permanent damage to the brain (mild to moderate TBI) that may or may not get better with time. The neurologist said I would have to re-learn how to do some things and learn to compensate for the things I can no longer do. She referred me to a speech language pathologist for cognitive therapy.
To add insult to the injury, I found out my insurance company wouldn't cover this cognitive rehab therapy that I so desperately needed. They said that it was considered investigational and therefore not covered. I couldn't understand how they could say that cognitive therapy was investigational. My SLP had to re-teach me even the most basic of skills. I did not retain information immediately. Only after many sessions with repetitive practice and reminders have I been able to retain and use even some of the information in a productive way. Before the cognitive therapy, all I could do was wander around in a state of confusion, not knowing what to do next. I couldn't even make a meal or grocery shop. I would miss important appointments and forget to pay my bills on time. I would even forget to pick up my kids at school. Cognitive therapy gave me the anchor I needed to live at least a semi-productive life.
Unfortunately, after the accident I was no longer confident in my ability to function at the level needed to balance a business and manage a household. I retired my business and lost income. Mounting bills forced my husband and I to sell our house. My husband has had a lot of problems adjusting to my new disability and this has put a strain on my marriage. My children miss their home and the friends they grew up with and they can't understand why I am unable to do things I used to do.
I found out that I was not the only person having problems getting cognitive therapy paid for by insurance companies. Knowing how much the therapy was helping me, I couldn't imagine someone else with a head injury not getting the therapy they needed because they couldn't afford it. I was fortunate enough to have an understanding SLP who did not ask me for any money up front. I wouldn't have been able to afford to see her otherwise. I decided to appeal the insurance company's decision, hoping that it would not only help me, but also help other people as well.
With the help of an attorney, I learned that my insurance company did cover this cognitive rehab therapy as an inpatient treatment for TBI. He argued it should also be covered as an outpatient treatment for MTBI. I requested an independent review panel, hired by my insurance company. The panel ultimately agreed that cognitive therapy is not only beneficial but also an invaluable therapy for outpatients of MTBI. I won my appeal! It is my hope that more people can be properly diagnosed and treated earlier in their injury.
From the American Speech-Language-Hearing Association. Used with permission. www.asha.org.