Amanda Siebe was just another twenty-something trying to make ends meet by working overtime at a restaurant when she suffered what she thought was a rather innocuous ankle sprain.
By her own account, Amanda had grown up outdoors, often hiking, camping, whitewater rafting and leading Boy and Girl Scout groups, so she was no stranger to the occasional bump or bruise. Not wanting to miss any shifts, Amanda waited three days to tell her employer about the injury, and by that time her ankle had swollen up so much she could barely move it. A doctor prescribed her crutches, and told her not to put any weight on the foot.
Moving around the restaurant on crutches was no easy task, but Amanda tried to make due. After one particularly painful fall, Amanda was sent home for six weeks to rest and recover, but her ankle did not show any improvement. When her ankle troubles got worse, Amanda was forced to move in with her parents. Amanda eventually began receiving workers’ compensation treatment, but her foot was still not healing property. 11 months and a handful of doctors after the incident, Amanda was diagnosed with Complex Regional Pain Syndrome.
CRPS, also known as Reflex Sympathetic Dystrophy, is a form of neuropathy where the nerves in the affected area register all forms of stimulation as pain. The brush of a pant leg or blanket can feel like the area is being stung by hundreds of bees. Even worse, CRPS slowly spreads to other parts of the body over time. Over the course of a few months, the condition had spread from Amanda’s ankle to both of her legs. While there are treatment options to dull the pain, there is no cure for CRPS.
Amanda had tried numerous treatments, from nerve blocks to steroid injections, but nothing can fully rid the pain she feels on a daily basis. She uses a wheelchair to get around, as walking can become too painful.
Over the years, Amanda has learned to deal with her prognosis, and she has a new outlook on life. By her own accord, Amanda is married to the “man of her dreams”, and he continues to raise her five-year-old son. She credits family and friends to helping her fight through the daily pain.
Dr. Silverman comments
As a human being my heart goes out to Amanda. She has accepted to live a life full of pain, but this piece is as frustrating to me as it is heartbreaking. Amanda hasn’t had all the treatment she deserves, and all because of an old school of thought in Orthopedics.
Back in the day, Complex Regional Pain Syndrome was known by the much more confusing and less descriptive term Sudeck’s Atrophy. Later on, it became known as Reflex Sympathetic Dystrophy. Better, but RSD still only describes the end stage of the condition when the limb is dystrophic. The rule of thumb was to never ever operate on these patients if at all possible, as you would only make them worse.
Why did this rule evolve? Well, if you operate on a patient with this syndrome, or if you even examine them too aggressively, you can get a flare of the disease. A flare of CRPS is a horrible thing to endure. Pain is rated a 10/10, and narcotics barely affect it.
Nowadays we can prevent a flare of the disease. Lumbar Sympathetic nerve blocks temporarily quell the disease and can be curative. If given around the time of surgery, a patient can avoid a flare. Dr. Tom Cohn, MD, is an expert in CRPS. He knows how to stop a flare like a brick wall. He also knows that that CRPS is best treated as a “team approach” with other doctors.
The thing I found most frustrating about the article is that Amanda constantly fell while trying to work through the pain. Amanda is walking around with an abnormal gait, irritating her ankle and aggravating her CRPS, and nobody will operate on her. No one but a select few of Orthopedic Surgeons who know CRPS, who understand it, who have studied it, and who have ventured into the realm of treating it.
I am one of those Orthopedic Surgeons, but I didn’t make this treatment up. I was taught how to do this by my fellowship advisor, Stephen F. Conti. There are at least 20 other people in the US and Canada, trained by Dr. Conti, who know how to manage this problem.
If Amanda doesn’t address the cause of her CRPS, she will never be rid of this disease. Unless she addresses the root of the problem she will end up with partial pain control and a Spinal Cord Stimulator. Like she said, the brush of a blanket causes pain. How in the world can she be expected to tolerate an unstable ankle if the air hurts her?
Amanda’s story is moving, but she is incorrect in thinking she can’t stop the pain. She can be rid of her disease, or at a minimum be much better. In the last eight years I have treated dozens of patients with this problem and none have become worse; all have become better and some (those with less than one year of symptoms and no other causes of nerve problems such as disc herniation) have been cured. I have had patients demand removal of pain relieving spinal cord stimulators, and others return to full activity and live out normal lives. Are they all a raging success story? No, but they all get better if I can find something to fix.
Related source: Lifeinpaincrps.blogspot.com