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Transformation and Hope—The Means to Recovery
By Kathleen Campbell, M. Div
The Onset and Diagnosis of CRPS
My podiatrist diagnosed Reflex Sympathetic Dystrophy on February
21, 2002 but it was four months earlier on October 13, 2001
when a throbbing pain in my right foot woke me at 2 a.m. from
my usual deep sleep. The next day the pain was unbearable
and the only shoes I could wear to work were a well-worn pair
of running shoes, with the laces as loose as possible without
the shoe falling off. I began limping, couldn't sleep well
and found driving was difficult because of the pressure required
to use the brake and gas pedals. I have never been one to
seek medical help quickly. I birthed two children without
taking drugs, and figured I'd get over this foot pain. I figured
I must have somehow broken a toe and the pain would just go
away in time. Instead the pain increased, and so after four
weeks I saw a podiatrist who determined I had "Morton's
neuroma", a swollen nerve between the third and fourth
metatarsal bone. I received two shots of cortisone near the
site of the neuroma over the next three weeks. The pain persisted.
Dr. Barrett then suggested orthotics, which made no sense
since I could barely tolerate the shoe on my foot. I couldn't
imagine jamming anything else into my shoe and making it even
tighter. My other option was surgery. Cut out the nerve, and
he promised that with each day I'd be getting better rather
than dealing with this downward spiral of pain.
I was not convinced, and so found a Chinese healer instead,
one highly recommended by a friend. A session of acupuncture
flared up the pain and triggered temporary swelling throughout
the foot. A follow-up session with acupressure, however, brought
welcome relief. Somehow, she was able to touch the foot without
stimulating more pain. But regrettably, it was only for the
hour I was with her. By mid-December I could not wear any
of my shoes, and was hobbling in a pair of newly purchased
Birkenstock clogs that had a gel pad built in for "added
comfort". I did Christmas shopping with catalogs, and
pared down grocery shopping to a ten-minute sweep for what
was on my pre-planned list. I learned to drive with my left
foot after an unexpected nerve spasm shot up through my right
leg causing the car to jolt to a stop in the intersection
on Proctor. Weary from the pain and lack of sleep, I opted
for surgery on January 16th.
Two weeks post-surgery, Dr. Barrett reported the surgery
a success. He removed a nerve that was looped up like a snake
forcing it to pop out when he made the incision. Never in
twenty years of practice had he seen a nerve under so much
pressure. At the next post-surgical visit on February 12th,
there was a marked reversal in his prognosis. He lightly touched
the surgical site and I immediately pulled back. His eyes
widened with concern and what seemed to express a personal
sense of failure. His only words were, "We've got to
get this under control or there could be serious long-term
problems." With that, he hurried from the exam room,
leaving me alone and bewildered. What happened to the glowing
success from two weeks earlier? He returned a few moments
later with a syringe and began injecting my foot without explanation,
leaving me more confused. Three syringes later, he finally
explained what he was doing: trying to warm up the foot with
anesthetic in order to produce a vascular flush. The foot
had swollen out of proportion to normal, and there was a dramatic
decrease in temperature and there was an aura of pain so great
that his nurse was particularly hesitant in changing the bandages
from the surgical site. He told me I had Reflex Sympathetic
Dystrophy, which I later learned is now known as Complex Regional
Pain Syndrome (CRPS).
CRPS is a painful condition that affects an extremity -
a foot or hand. When it develops, it often follows some trauma
or injury, sometimes as simple as tripping over a shoe or
minor sprain. Its cause is unknown, but the clinical symptoms
include burning pain, changes in skin temperature and color,
allodynia (i.e., pain elicited by stimuli that normally are
not painful such as a sheet on a bed, or the wind on the skin),
edema (swelling), and tropic changes such as shiny skin, hair
loss or abnormal nail growth. It can also involve loss of
bone mineral, muscle weakness and problems with motor coordination.
Those suffering with CRPS develop a pattern of protecting
or guarding the limb because of the severe pain. I was using
a walker at home at the time of the diagnosis and relied on
a motorized grocery cart to shop. I managed to limp about
work without the walker, as I was embarrassed to use a symbol
of disability in public. For some patients, they cannot recover
use of the affected limb because of the chronic pain and resultant
disuse. I experienced all symptoms except the tropic changes
to skin and nails.
With the RSD diagnosis Dr. Barrett sent me home with instructions
to keep the foot warm. He gave me a prescription of Dibenzyline
to warm the foot, I took a hot bath each night and wrapped
my foot in a hot sock and blanket while at my desk at work.
A week later I returned to my podiatrist who still had no
good news. The nerves weren't responding to this heat therapy.
My foot was hypersensitive to any touch, and my ankle had
swollen to the size of my knee. On the day of this appointment,
I had taken the day off work because it was my children's
mid-winter school holiday, and planned to take them from the
podiatrist to their dental appointments and then a movie.
Dr. Barrett changed those plans. He and his staff made calls
to a nearby physical therapy clinic and to my primary care
physician and insurance provider. "You need to get into
therapy today. Reschedule the dental appointments." This
was medical urgency I'd never experienced. So, with one more
syringe of anesthetic, enough to relax my foot so the therapist
would be able to touch it, he sent me to a clinic down the
street.
The owner was on vacation, and so I got Jennifer, the substitute
therapist in charge. Jennifer matched my podiatrist's alarm
over the condition of my foot. I sat on a molded plastic chair
across from her as my leg and foot rested on her arm, now
easy to hold with the anesthetic at work. She demonstrated
how to get my foot moving again: pump my ankle, draw the alphabet
with my toes, circle my ankle to the left, and round to the
right, press my foot against an inflated beach ball, and out
in the hall, I practiced rolling on my toes as I walked. She
watched as I tried to imitate her instructions: pump, circle,
draw, press, and roll through the toes. Good. Sitting back
in the chair with my leg in her arm again, she then measured
the swelling of my foot. Putting down the measuring tape,
Jennifer leaned closer while still holding my leg in her arms,
and with the clarity of a boot-camp sergeant she made clear
what was required
"You need to do these exercises every hour, on the
hour, and set a timer if you have to. Three times a day
you need to elevate your foot, way up high, above your heart,
for twenty minutes or more at a time, then massage the foot,
especially the toes that hurt and the surgical site. Your
priority is not your kids, not your work, not anything else.
Your priority is these exercises, or you'll lose the use
of your foot. Can you do it?"
Tears streaming down my face, knowing that my 8-year-old
daughter and 10-year-old son were awaiting my return home
and counting on Mom to take them to the movies, I nodded Yes.
I had little to say to this therapist. I felt like my life
was just blast to bits. Never had I stared into the face of
God and lived. I wondered how I could hold on. Being a religious
person, I took some comfort in the knowledge that it is far
more God who hold us than we who hold Him. Somehow, I'd get
through.
2 2 mg. of Dexamethasone Phosphate plus 5
mg. of Triamcinolone Acetonide on the first visit, and then
20 mg. of Triamcinolone Acetonide mixed with Xylocaine and
Marcaine twenty days later.
3 These symptoms are described in Robinson,
J.L. Complex Regional Pain Syndrome. Bulletin: State of Washington
Department of Labor and Industries, November 1997, PB97-05,
p. 4.
4 The anesthetic used was Lidocaine,
1% and Bupivacaine, ½%.
5 Weatherhead, Leslie D. A Private House
of Prayer. Abingdon Press, Nashville, 1958, p. 23.
»
Transformation and Hope
»
Things That Didn't Help My Recovery
» Challenges
and Setbacks
» Appendix
1: My Goals for Therapy and Recovery from CRPS
» Appendix
2: Physical Therapy Exercises |
