My TOS Life: July 2013

Thursday, July 4, 2013

Independence (From Pain) Day

Funny thing about TOS: when I feel bad I don't like to talk about it. Who wants to hear about another's aches & pains, or how many pain pills they took today, or how they couldn't do what they wanted to because they hurt so much? On the flip side, when I'm feeling really good I don't want to talk about that either, because I'm afraid I'll jinx myself and start the cycle all over again. Alas, this TOS life is complex. Yet, I will admit that for the last two or three days I have been feeling wonderful, with little pain and functioning like a "normal" person, or at least my "normal," before TOS and my other repetitive strain injuries railroaded my life. No simple feat, these pain-free days. They follow a series of alternative therapies and remedies mixed in with some mainstream medical magic: acupuncture and soft-tissue reprocessing from the Pain Whisperer, Tom Chi; a 45-minute all-over body massage by the wonderful Connie Wehmeyer at Subtle Energies; a trial of Curaphen, a pain relief health supplement by Euromedica; a cortisone shot in my right shoulder; weaning away from Cymbalta, an anti-depressant used to alleviate chronic muskuloskeletal pain; an Aquasize class at the Y; lots of ice to elbows, ankles, and shoulder; Topricin pain cream; and plenty of rest and sleep. It is not a quick or easy job to manage pain. In fact, it's rather time-consuming and round-the-clock. Disability is not fun for anyone, especially me because I feel I have so much to offer and so much to do and be, and as you may have surmised it can get expensive. Insurance does not cover any of the alternative therapies, and what mainstream medical treatments they do cover have to earn their approval. Sometimes it's frustrating trying to find a system that works. Then there are times when all the pieces fall wonderfully together and some sort of pain nirvana is achieved, which is where I am today. Whatever I'm doing, it's working for now, and I'm grateful. Happy Independence Day!

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