My TOS Life: March 2012

Wednesday, March 7, 2012

Spring Fever

Every once in a while I get one of those days, a day without pain, when I can almost forget about the TOS. Today is one of those days. It's my day off from work. I completed all of the tasks on my to do list. I gave an hour to the food pantry at my church. I went out for lunch with my husband. I'm writing this post. And is it a coincidence that today also happens to be a near spring-like day in early March? Temperatures in the low 60's, mild breeze, sunshine. Maybe it's just a touch of spring fever, but I'll take it, and revel in every moment.

Funny thing about chronic pain. When it's got me in its grip, I can't do much of anything. I do only as much as I can of what's really got to be done, and let the rest slide for a better day. Then the better day comes, and I feel like taking on the world, but I hang back, because the threat of spiralling back down into the coccoon of exacerbated pain and all it requires nips at the edges of my comfort level. Just one wrong move, one minute too long at the keyboard, one overly complicated recipe, can be the catalyst for a flare-up, and I'm back on the couch with the heating pads, the TENS unit, the NSAIDs.

So although many people may see a day like today as an ordinary day, I see it as a gift, precious hours and minutes when I am free to be the me I want to be, the me I was before the TOS.

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, three occupational therapists, 11 physical therapists, three massage therapists, one acupuncturist, one chiropractor, four hospitals, three 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.

My TOS Team

Michael Daras, MD, PhD - Neurology
Ekong B. Ekong, MD - Occupational Medicine
Lyall Gorenstein, MD - Thoracic Surgery
Winston Kwa, MD - Occupational Medicine
Kaiyu Ma, MD, PhD - Neurology
James Romano, DC - Chiropractic
Samir Sodha, MD - Orthopedics
Daniel Tomlinson, MD - Orthopedics
Nelson Wong, MD - Rehabilitation Medicine
Access Physical Therapy and Wellness
Tom Chi, The Pain Whisperer
Mt. Sinai Center for Occupational & Environmental Medicine
Subtle Energies Holistic Health Center
Ouimette, Goldstein & Andrews, LLP