After years of misdiagnoses and endless testing with what appeared to be no “light at the end of the tunnel”, I feel as if I finally have a reason to believe again. I understand that this trial is just that – a trial. But for me, it is also hope. And that is so much more than just a research trial and a possible improvement in my condition.
I am Shannon Leigh Stocker, and my RSD began 7 years ago when I had just completed my last rotation in medical school. I had two loves at the time: children and music. Having been a patient myself in my 20’s, I wanted to give these children hope through pediatric oncology, and perhaps even reach out to them and others through my lyrics and my compositions in the music that I wrote and sang, and even through my dancing (I taught ballroom dance, which helped pay my way through medical school). Sadly, that was not meant to be. I decided to delay my post-graduate Boards because of the pain, thinking I could come back to them after resolving whatever the problem was and move on with my residency in pediatrics. I had, however, suffered a fracture of my right humerus as a child, and then after graduation, a single neurofibroma was removed from a nerve on my right arm (the right brachial cutaneous nerve), causing enough injury to spark CRPS. The pain was relentless and doubly cruel, as I had spent 11 years in college, grad school, and med school (and was $150K in debt)… but I could not complete my residency as I had wanted. For years I went undiagnosed, with many physicians telling me they thought I had everything from spasmodic torticollis and treating me with botox injections, to telling me that I was a drug seeker who needed to see a psychiatrist. But the burning pain and severe allodynia would not stop, and soon I had what I called “ice picks” – hot, sharp, sudden sensations that felt as if someone were stabbing me with an ice pick or hitting me with an electric fence.
Eventually, a young pain doctor in Tennessee was convinced of what my husband and I had believed for years; that I had RSD (although he had never treated the condition prior to me). Just before seeing him, I had been given a stellate ganglion block, but it had worsened my pain. A peripheral nerve block directly into my scar also worsened my pain. By this time while I was seeing the TN physician, I was taking large doses of narcotics and benzos to combat the pain and the spasms, wearing lidoderm patches, trying PT, a TENS unit, and I had tried several other medications ranging from opiates to neurontin, lyrica, anti-convulsants, anti-inflammatories, tricyclics, muscle relaxants, sleep aids, and steroids. I was in counseling the whole time also, trying to deal with a chronic pain problem that, until this time, no physician even admitted I had. Throughout the past, I have also tried acupuncture, chiropractic, relaxation and meditation techniques, sympathetic and peripheral nerve blocks, herbs and supplements, hormones, steroids, several topical agents, and laser therapy.
I met a gentleman whom I helped to start a company, helping physicians build (or refinance) buildings that are owner-occupied. The company took off, and eventually I moved down to Orlando, FL, where I now reside, and my co-workers became my family and my support system. Between them and my husband and his family, I have been able to survive several other misdiagnoses. After moving, I saw a pain doctor in Florida who did not believe I had RSD, although each time he had to give my disease a name, he called it “CRPS” under a pseudonym (“hand shoulder syndrome”, for example). He gave me trigger point injections into my pectoralis major and pectoralis minor muscles, neither of which helped, and diagnosed me with adrenal insufficiency. He put me on Pepto Bismol twice a day for medication-induced GERD, and I wound up diagnosed by a physician with the CDC with bismuth toxicity, nearly succumbing to kidney failure. I changed physicians and saw an RSD specialist who diagnosed me immediately with RSD. His anesthetist gave me a peripheral brachial plexus block, but this also failed and increased my pain. At this point, he agreed that now was the time to seek out a ketamine treatment, as this was my only remaining viable option.
By this time, I had seen enough physicians that I had also been treated for Multiple Sclerosis with 3 different drugs (including daily injections into my thighs or abdomen), so my husband, Greg, and I went to Mayo at Rochester to get a final diagnosis. There we learned that the M.S. diagnosis did not hold up, and they were convinced, after thermoregulatory testing, QSART, a sweat test, EMG, X-Rays, a spinal tap, blood work, a neuro exam, a full body exam, a review of prior MRIs, etc, that the main condition that I needed to be concerned about was my worsening RSD, which had now spread from my right arm to both my legs. They were also concerned about polypharmacy, as the narcotics and other medications combined were causing hyperalgesia, diplopia, myoclonus, and a variety of other problems. Finally, they had, after 14 attempts, inserted a PICC line in my left arm. Within just a few days, I had mottling of the skin in this area, along with a cooling of the skin and swelling of my left arm. My circulatory system could no longer be accessed, so a port was inserted December 11, 2006.
I attempted to get into an sub-anesthetic (awake) trial, but was not accepted because I did not meet the exact protocols for their treatment (ie, systemic RSD has traditionally not responded as favorably to sub-anesthetic doses of ketamine as compared with deep anesthetic doses). Then, I found you.
The disease has spread from my right arm into both my thighs and then into my left arm, eventually working its way into my torso, my right neck and even my lower right face. It seems that only my head, palms, and the soles of my feet are spared. I have coarse black hair that has grown in patches on my right arm, in both axillas, my right groin, and now on my left arm. The nails on my right hand grow more quickly, but break easily. My skin is mottled and my muscles are atrophied, while the lesions/ulcers on my right arm have begun to appear on my left arm and right thigh. The burning, allodynia, and “ice picks” remain most prevalent still today, and I have lost almost 20 lbs due to the nausea I feel from the pain. I sleep no longer than 1-2 hours at a time, and often need help dressing and washing myself. Sometimes I take 3 hours to get ready in the mornings just so that I can do it alone. I am more determined than any other person than I have ever known. I want with all my heart to get back to the company that I helped to create for so many reasons; my team depends on me, and they have been supporting me while I have not been able to work. I am working part-time now, but they see the pain in my eyes, hear it in my voice every day. They want me to get well as much as I want to return to work and relieve some of their stress. They are equally grateful to you for this chance........ Also grateful is my family – my father, my sister, Courtney, and my brother, Shawn, and his family. I am grateful that I have their love to help me keep hope alive through this pain every day, in addition to my husband’s family and my work family. I am so blessed to have 3 “families” helping to guide me, praying for me and loving me the way they all do. I don’t know that I could get by without each and every single one of them.
In the past 7 years, my husband and I have not been able to have a family because of RSD.
I have not able to pursue a career in medicine because of RSD.
I have not even been able to pick up a guitar, or play piano, for years – because of RSD.
I am 37 years old and I go through airport security in a wheelchair. I walk with a cane. All because of RSD.
And now, you have given me hope. Because of this coma trial, I have a reason to believe that one day, I may have a family. I will likely succeed in my new career. I will likely again write music. I may even hug my husband again.
And I just might dance.
Thank you, Dr. Kirkpatrick. Thank you for giving me and so many other young people a fighting chance at life.
With Most Sincere Gratitude,
Shannon Stocker, M.D., M.S.
C-MAC Managing Director, Healthcare Group
A HUSBAND'S PERSPECTIVE
RSD has defined my relationship with Shannon since the first few months of our relationship. I met Shannon in Louisville at a local café where she was playing guitar in an acoustic duo that, along with dance lessons, helped her pay for living expenses while in medical school. She is really an incredible singer, musician and entertainer. I made it a regular part of my week to come by and check out a show over the following year. In early 2000, I landed a position with an Internet startup company in Chapel Hill, NC. Two weeks before moving, Shannon and I began to date. After sharing our love of music, children, animals and nature, it became clear that we were right for each other, and we married within six months.
Shannon had random shooting arm pain since I met her, yet around the same time that we married, the pain became more constant and started to be accompanied by severe spasms that pulled her head down toward her right shoulder and flung her arm up in the air. We went to see an Internist who prescribed percocet. Over the following few months the pain relentlessly increased along with the spasms and the medicine. She worked up to nearly 10 percocet per day and a combination of ativan and clonezepam to help with the spasms and sleep, but the pain and spasms continued to progress. At times I would have to brace her so that the violent spasms would not hurt her. The pain was localized to a small area in her right upper arm. The only therapy that helped was acupuncture, given by a woman whom became like family as she helped relieve the pain for a few hours after each visit.
We saw the chief of neurology at UNC to discuss Botox injections. Previously, physicians had told us that they were looking at a differential of Parkinson’s, Spasmodic Torticollis, and Epilepsy. Parkinson’s and Epilepsy were quickly ruled out. Shannon was given a botox
injection which was excruciatingly painful, as it utilized a large syringe for over 2-3 minutes directly into her shoulder and neck. I had to hold Shannon as she writhed in pain. The neurologists told us that she needed relax as the injection was “not as painful as she made it out to be.” Of course, Spasmodic Torticollis is generally a pain free disease characterized as a movement disorder. When the injection failed to paralyze the muscles, he told us that he was referring Shannon to a psychiatrist, as he felt that her condition was of psychogenic nature and likely psychosomatic (not of physical origin). As he left the room, Shannon collapsed into tears exclaiming that she knew that she wasn’t crazy. I was furious. At that moment, Shannon and I could feel a nodule in her arm that the neurologist had missed upon physical exam. We requested an MRI. He reluctantly agreed to prescribe it. A 2.5” by .5” mass that turned out to be a neurofibroma was found strangling a sensory nerve in her arm. This led to the surgical excision of the tumor and a large section of her nerve sheath. Although the neurosurgeon told us that the spasms could in no way be related to the tumor or her pain, the spasms stopped entirely after the tumor was removed. The hospital stay was a nightmare, as they took Shannon off of all percocet without titration right after the surgery in place of a morphine drip. Unfortunately Shannon had a collapsed vein and she went without any medications for nearly fourteen hours the night following the surgery, as the physician on call was “unavailable”. She spent the night in pain, with chills and getting sick. My mom came in for the surgery, as she was a nurse for 25 years, and she helped Shannon tremendously that night. I took a leave from work for 3 months during and after her surgery until things stabilized enough that she could get through the days alone. She started back into work around the same time that I went back to my job. If it weren’t for the generosity and compassion of our landlords, we would have been evicted from our rental home, as we were behind on every bill and could not afford payments for months.
The two years following the surgery Shannon’s pain stayed between a 2-4 on the pain scale. She was on oxycontin and oxycodone along with lidoderm patches, and she tried a string of other meds while she worked at home, reviewing medical charts for attorneys covering medical malpractice cases. She was able to tolerate the continued lower pain. Gradually, however, tolerance to the meds increased, and hyperalgesia started to make treating the pain more difficult. In those first two years no pain blocks were offered and no talk of possible CRPS/RSD was discussed. Shannon did try PT and a TENS unit. As the pain and medication levels slowly increased, I began reading and researching at the library and the internet to try to make sense of what was going on, as neither Shannon nor I believed that she was destined to keep getting worse for the rest of our lives. I had lost a lot of faith that we could rely on her physicians to find the answers.
In 2003 we moved to Tennessee and found it very difficult to find a physician who would treat a young woman with chronic pain on narcotics. The first pain center we went to in Gallatin, TN set the tone. The pain doctor rolled his eyes at Shannon when she described her pain. He told her that he did not prescribe codeine and that he was going to switch her to Avinza, a long-acting morphine. I asked him about a condition that I had started to read about on line called RSD. He snapped back that “she does NOT have RSD.” He also informed her that he was not convinced of the severity of her pain, and wanted to send her to have a Nerve Conduction Study and EMG. He moved her to Avinza without titration from the Oxycodone and Oxycontin and made a huge mistake. According to the Avinza web site, 2MG of Avinza should be given for every 1MG of codeine when making the transition. Shannon was on 80MG of Codeine. She should have received 160MG of Avinza. He prescribed her 40MG of Avinza. We had not checked the Avinza web site yet and were simply following the prescription as written, not to mention that not all opiates are equal with each person in terms of their ability to provide adequate analgesia. Shannon did not sleep the next two nights and was curled up in the bathroom covered in blankets getting sick. The doctor would not return my call. The second day was when Shannon had the EMG scheduled. We went and the physician told us that in his 40+ years of medicine, he had never seen a patient under poorer pain control than Shannon was in right then. He referred us to a new pain doctor who fortunately was a far more compassionate and competent physician than the Gallatin physician and he subsequently told us to never go back to see the previous doctor.
The new pain doctor in TN had never treated RSD, but he agreed with us that the symptoms matched. Shannon had yet to have significant trophic changes, but there was temperature asymmetry, the spasms had begun to return, and the pain was now predominately burning, stabbing, and her skin hurt to touch (allodynia). After a failed stellate ganglion block and a failed peripheral nerve block directly into the surgical scar, the pain increased significantly and red, purple and blue mottling began to appear on her arm. Each block increased the distribution of the pain. The pain scale appeared to jump a point or so after each block as well. At least this physician was sensitive to her pain, and her pain medications were increased along with lidocaine patches now being prescribed.
Shannon has also suffered from some very severe side effects of medications that should not have been prescribed together. We had numerous trips to the ER and on two occasions I nearly lost her. I have spent nearly 20 hours per week on weekends and evenings reading and contacting specialists to try to help Shannon get the fighting chance that she deserves to heal over the last 4 years. I put off a career of my own to work a lower paying, yet more flexible job that has allowed me to be with Shannon when problems arise, as the owners of my company have supported us on every occasion. She has fought this disease with everything in her and she deserves to have someone fighting with her.
The past six months have been the most challenging. Shannon has been treated for numerous misdiagnoses. The unnecessary treatments secondary to the misdiagnoses have exacerbated her RSD and contributed to it spreading to her legs, left arm, abdomen, back, buttocks, chest, shoulders, axilla, feet, neck and now the right side of her face. To complicate things, a 6-month prescription of Pepto Bismol, led to severe ataxia (full body shaking and wobbling) and near kidney failure. Unnecessary shots for MS contributed to the spread of the RSD to Shannon’s abdomen and legs. Fortunately, after a battery of definitive tests, Mayo Clinic Rochester ruled out the unfounded assertion that Shannon had MS. Misdiagnoses appear par for the course with neurological diseases. We have learned to seek out the best and to make sure we also do our own research. This is what led us to Dr. Kirkpatrick and the ketamine coma trial. We have been reading about both the coma and awake trials since 2003-2004, well before any physician would entertain the possibility that Shannon had RSD. Fortunately Shannon’s determination has paid off. I think of the number of nights that I used to lie awake watching her twitch and cringe in pain as she tried to sleep or observed her crying through the 2-3 hour process of washing and prepping her right arm each day and night. At night, I can only stroke her hair and kiss her on the forehead and tell her that it will get better. It’s the most helpless feeling I have ever experienced. It’s only in deep sleep that I can see Shannon’s face without the pain written all over it. It is so refreshing to see her look relaxed, even if she is just sleeping. Unfortunately she never sleeps more than an hour or two at a time. I can only hope and pray that some day I will see her pain free while she is awake. I miss watching and hearing her play her piano compositions. I miss the times when I used to pick her up at the airport and she would run over and jump up wrapping her arms and legs around me to give me a hug when we had not seen each other for a while. I miss those hugs a lot. I realize that this research trial has risks and at times will be very disquieting to watch. But the thought that there is a chance that she could live again like she deserves, with all of her talents, ambitions, and that contagious, compassionate enthusiasm that defines who she is…that thought now keeps me up at night lying in bed smiling, imagining what could be.
Thank you for this opportunity. Thank you for the hope. I cannot imagine anyone more deserving of this treatment or grateful for the opportunity than Shannon.