Hidden Illness: My TOS Testimony

Wellness Warrior Lisa Douthit headed to Washington, D.C. recently to advocate for those living with rare or obscure illnesses. She made a pitch for personal stories to take with her to present to lawmakers. I accepted her challenge and offered my TOS testimony.

Today is National Repetitive Strain Injury Day and I'm sharing the story I gave Lisa here. My twelve-year lifetime with Thoracic Outlet Syndrome, as well as a number of other RSIs, has been a roller-coaster of physical, mental, and emotional duress. It's hard to believe I've been living with it for so long, and I understand I will always live with it. 

My TOS testimony: 

In 2006, my life was permanently disrupted by a number of conditions caused by repetitive strain injuries due to an inappropriate work station at my job: Thoracic Outlet Syndrome, Carpal Tunnel Syndrome, and chronic pain. I am a nurse and at the time worked for a regional medical center as a case manager, specifically performing clinical documentation review. I was given a laptop on a utility cart that also carried a large and heavy printer. I pushed that cart all over the building, diligently doing my work for a year or so before I started waking up at night with numb hands. This soon led to chronic and relentless shoulder pain, a frozen shoulder, and nerve and vascular problems with my right arm. My neck soon developed chronic pain and decreased mobility. This resulted in total disability and the loss of the best job I ever had.

Most people do not understand this condition, including physicians. I was fortunate to find a few doctors, including a an empathetic and gifted thoracic surgeon, in New York who "got it" and I received treatment. I endured three surgeries and years of physical and occupational therapies, chiropractic, massage therapy, and other pain management modalities. Twelve years later, I’m still in therapy.

I continue to suffer chronic neck, shoulder, and arm pain, exacerbated by working on a computer. I work part-time and receive Worker’s Compensation benefits. I had long-term disability benefits but lost the fight to keep them in 2017. Many of the plans I had for my life have been sidetracked. This has created numerous hardships for my family, in particular loss of income compounded by expenditures for treatments not covered by insurance, and my ability to perform tasks I once did with ease.

It is important that legislators thoughtfully consider the trials of those living with rare and chronic disease and pass legislation that enables them to receive the diagnostics, medication, and treatment they need to overcome their issues and lead productive lives. Leave the politics and the PACs out of it. This is about people, not profits and politicians.

What is Thoracic Outlet Syndrome?

Thoracic Outlet Syndrome (TOS) is a complicated collection of neurological and vascular problems in the head, neck, shoulders, chest, arms and hands caused by pressure on the nerves and vessels in the thoracic outlet area. This area is the space between the clavicle and the first rib where the nerves and blood vessels pass on their way to the arms from the neck. Most common symptoms are: neck and shoulder pain; chest wall pain; upper extremity pain; headaches; heaviness of the upper extremities; numbness and tingling of arms and hands; weakness of arms and hands; swelling of fingers and hands; discoloration of the fingers, usually blue, but sometimes white; cold hands and/or fingers (may only be one or two fingers).

How Do You Get TOS?

It's not hard to get TOS. It happens frequently to computer users, athletes (such as swimmers, baseball, basketball, and tennis players) and hairdressers. Why? Because all of these activities either require over-the-head arm action or static postures, leading to repetitive strain injuries (i.e. tight or spastic muscles, inflammation, tendinitis, bursitis.) In my case, poor ergonomics at a computer work station combined with static postures was the culprit. TOS is also found in people who have cervical ribs, extra ribs found between the clavicle and the first rib. TOS may be relieved by physical and occupational therapy, massage, and correction of ergonomics. In many cases, although as a last resort, the surgical removal of the first (and/or cervical) ribs is performed in an effort to gain relief.

The TOS Shuffle

Shuffle: n 1: an evasion of the issue 2: a confusing jumble (as of papers or events), Merriam Webster

The TOS Shuffle: n the method in which a person with suspected Thoracic Outlet Syndrome is shuttled through endless and often useless doctor's appointments, exams, tests, and treatments over a long period of time, perhaps years, before a definitive diagnosis is made.

My TOS Shuffle: One physiatrist, four neurologists, two orthopedists, three thoracic surgeons, two vascular surgeons, four anesthesiologists, one rheumatologist, four pain management specialists, three occupational therapists, 11 physical therapists, three massage therapists, one acupuncturist, two chiropractors, four hospitals, five lawyers, two judges, six case managers, one claims adjuster, four MRI's, three EMG studies, six chest x-rays, one nerve block, one SSEP study, umpteen medications, three surgeries.

Testimony is a powerful force. Silence is not a solution. I will speak up for myself and others with hidden illnesses as long as I can.