On March 5, 2007, I was injured while working as a special education teacher here in Southern California. I was diagnosed by doctors with a left wrist sprain and put on restricted duty. A splint was given to me to wear. Oddly, it felt better to have the splint wrapped tightly around my wrist. When the splint was off, the breeze from a fan, the waft of a door closing or the draft of someone walking by me would cause more pain. Over the next two weeks I began to notice changes in temperature to my wrist and hand. My hand and fingers began to change colors; one minute they were bright pink and the next a cool purple/blue. Mysterious swelling would come and go throughout the day. My palm would sweat. I couldn’t find a comfortable position to sleep and the ibuprofen wasn’t helping.
I returned to the clinic several times over the next two weeks explaining my symptoms. My x-rays that were taken at the time of the injury were reviewed, and there was no break. I was given Vicoden and anti-inflammatory medications. I saw no improvement.
Approximately two weeks after the initial injury, I experienced an intense, sharp burning pain radiating from my wrist up to my elbow while trying to straighten a small stack of papers at work. I immediately returned to the clinic and I was placed on temporary total disability. Little did I know that I wouldn’t be able to return to my class for over 2 years now.
That was one of the most difficult days of my life. I loved teaching and had built my special education program at the high school from a classroom without even so much as a desk, to one where students learned practical, functional life skills that increased their independence. My students were my kids. Most of them were in my classroom fulltime for four or five years. I developed a very close bond with them and their families, and I’m still in contact with many of them today.
Within the next week, I saw another physician at the clinic who thought I might have a rare nerve disorder called RSD. I was referred to an orthopedist, due to the nature of my injury, and he confirmed that I did in fact have RSD. He then referred me to a pain management doctor.
The pain management doctor was amazed at how quickly I was diagnosed, as many people are misdiagnosed for extended periods of time. I, on the other hand, was told I was “lucky” because the disease was caught early and there were a number of interventions that could be used. However, I wasn’t feeling so lucky as the pain had now progressed up my arm to include my bicep, neck and shoulder regions.
Between frequent emergency room visits to manage breakthrough pain, my doctor tried stellate ganglion blocks with little to no pain relief followed by recurrence of even worse pain after every injection. Physical therapy and acupuncture aggravated by symptoms. My hand began to curl up into a tight fist. It remained closed for almost 1 year’s time. My nails dug into my palm and I was left to remove many ingrown nails. The hand became shiny from non-use. I walked with my arm guarded and extending my arm completely was agonizing.
A Spinal Cord Stimulator (SCS) trial in 4/07 provided good pain relief to my left arm, but permanent placement in 5/07 didn’t help much. The two leads migrated so they were revised and a third lead was placed in 6/07. It provided little pain relief and as of 6/08 I no longer use it. All three leads have moved and after hours of reprogramming, I still feel as though I’m being shocked when it is turned on.
In 5/07 I started complaining of bilateral foot pain. The CRPS was rapidly spreading through my body. I underwent several cervical epidural steroid injections and more stellate ganglion blocks. My medications were so many and changing so frequently, my husband started a spreadsheet he could easily update, print and carry with us to every doctor appointment.
I saw a psychologist to help me cope with my excruciating pain and life that had been turned upside-down. Suddenly my world was consumed with pain. My day was focused on when I could take my next pill. No longer was I defined by the things I thought I was: Christian, wife, mother, daughter, sister, friend, educator. My calendar now centered around the next doctor appointment. Phone calls consisted of medical updates, scheduling rides and trying to stay focused enough to carry on a conversation. I could no longer cook dinner for my family, care for my daughter, clean my home, much less manage my health care and personal needs. And this was “lucky”?
My pain management doctor felt he had done all he could for me and referred me to another pain management doctor in Los Angeles. In 11/07 I had 3 separate low-dose ketamine infusions without much benefit. At this point, I was completely homebound. I only left home when I was driven to doctor appointments. I could only wear tank tops, capri pants and flip flops due to the severe allodynia.
To complicate matters, a thoracic MRI revealed a left anterolateral osteophyte at T1-T2. It measured just 2mm in diameter and was entangled in a nerve bundle. Doctors believed it was playing a role in my pain. After consulting a neurosurgeon and thoracic surgeon, they agreed to remove the mass when my pain was better under control. They believed that removing the mass would free up the nerve thereby reducing my pain.
In 2/08 I had an intrathecal drug pump implanted in my stomach. It delivered a hefty dose of 5 medications (fentanyl, morphine, bupivicaine, baclofen and clonidine) into my spine at a constant rate. The catheter was placed higher on the spine so it would, in effect, target the arms.
With my pain still unmanageable, in 4/08 I had a resection of the first rib mass and neuroplasty of the sympathetic chain. Although the cartilaginous mass was not completely removed, the decompression is adequate and the nerve is free and clear. Emerging from the surgery, I experienced intractable pain. I was given ketamine and it helped ease the CRPS pain. I was able to then tolerate physical therapy and open my hand again.
I still had multiple hospitalizations and emergency rooms visits for pain management. I began receiving ketamine infusions again at a higher dose (900mg-1000mg) over a four hour period with relief ranging for a few hours to a couple days. I had hope again for a life without pain. However, the infusions cost $2,000 each so they were reserved for times when absolutely necessary. I could now see the benefit of a 5 day continuous infusion.
Meanwhile symptoms had spread to my right arm and both legs from hip to toe. The CRPS was in my face. So much so that brushing with an infant toothbrush was excruciating. I could only eat soft foods that didn’t require a good deal of chewing. I had to cut my long hair because I could no longer tolerate it touching my shoulders and neck. I can’t remember the last time I shaved my legs. The thought of it is agonizing. So much as a person’s breath could set off terrible spasms.
A Spinal Cord Stimulator trial for the lower extremities provided relief with permanent placement on 1/09. (That’s machine number 3 in my body, if you’re keeping count.) While the SCS minimizes the burning associated with the CRPS, I still experience horrific pain overall.
In 4/09 I had an intrathecal drug pump trial for my legs. It provided good relief but was advised by another doctor that the relief would be short-lived, much like the pump for my arms. He explained that over time the drugs in my system did more harm than good. I did not have permanent placement of the pump. (I figure I’ve got to be running out of room for all of these machines!)
In 6/09 I flew from California to Philadelphia, Pennsylvania and was evaluated by Dr. Robert Schwartzman. His recommendation is for me to participate in the ketamine coma research study in Monterrey, Mexico with Dr. Fernando Cantu.
In 7/09 I flew from California to Tampa, Florida and was evaluated by Dr. Anthony Kirkpatrick. He, too, agreed I am a good candidate for the research study. I understand the requirements of the study, including my return visits to Florida.
If I can help one other person in the world from not having to go through what I and my family and friends have lived for the last 2 plus years, it will all be worth it. For the first time in a long time, I feel like I might be closing in on CRPS. I’m ready to close this chapter of pain and open one filled with life.
July 26, 2009
2 MONTHS AFTER
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