Journal of Participatory Medicine (FiDA highlight)
Summary: The author describes the detective work she did to find the reason for her mother’s unexplained deterioration and lack of muscular strength in hands and legs following joint replacement surgeries. A careful neurological workup ruled out ALS but did not result in a clear diagnosis. Her review of the medical literature suggested that metal toxicity might be causing inflammation that was destroying the muscle. She describes the numerous difficulties and eventual success she had interacting with a number of physicians as her mother’s advocate.
Keywords: Participatory medicine, patient engagement, inflammatory myopathy, metal allergies, joint replacements, muscle weakness. Citation: Davis CC. Steel standing: metal meets muscle; a patient’s perspective. J Participat Med. 2013 Jun 5; 5:e23. Published: June 5, 2013. Competing Interests: The author has declared that no competing interests exist.
In 2008, my once active, vibrant, and energetic 68-year-old mother began to lose her ability to do things independently. Her body was succumbing to a debilitating weakness, and she was rapidly becoming unable to feed, dress, or care for herself without assistance.
She had played the piano since the age of 4, and been our church pianist for decades. Her upper body strength was tremendous. Then the gradual onset of her weakness escalated. I began noticing her difficulty in trying to pick up or hold a glass with both hands.
Previously, my mother had been examined by a hand specialist who strongly suspected carpal tunnel because of her history as a pianist and because her occupation before retiring included typing on a computer keyboard for the majority of her work time. The results of extensive testing and EEG were normal.
Within a few months of the onset of trouble with her hands, however, weakness developed in her legs. Her primary care physician referred her to a neurologist. The same tests and lab profiles were repeated, in addition to an MRI. Still no resolution or clue was offered. She appeared in good health with the exception of increasing muscle weakness, but again nothing significant was evident.
Unless one knew my mother’s daily behavior, actions, and habits, no one would have suspected she had troubling health issues. She was never one to complain or express personal difficulties. As her daughter, quickly becoming her primary caregiver, I also became her walking diary. It was my role as her spokesperson to communicate key information that my mother didn’t think to share with her physicians.
In a few weeks, she was referred to another neurologist with more clinical experience in a university (research) setting. He was young, eager, and very intrigued by my mother’s odd neuromuscular symptoms. After taking extra time to examine her carefully and listen to the information I was able to offer from observing her on a daily basis, he believed that she had ALS (Lou Gehrig’s disease). The next step was a muscle biopsy. My mother gladly agreed. She was extremely eager to learn what was happening with her body.
Within a few weeks she was diagnosed with a myopathy. However, the diagnosis brought more questions to mind, since a specific category of a myopathy or a potential cause was not found. That’s when I began my own research.
At this point, I questioned: “Why did the neurologist think mother had ALS and what were the symptoms he believed were so closely associated with myopathy?” In studying ALS, I quickly understood how the two conditions appeared closely related. Both started slowly. However, the origin and outcomes of the overall muscle weakness for each disease were quite different.
Hoping to learn which specific myopathy she may have acquired, I did more in-depth reading and spoke with close relatives about our family’s medical history. Based on this information, it appeared likely that my mother had inflammatory myopathy. That diagnosis was later confirmed by the neurologist who performed my mother’s muscle biopsy.
My next inquiry: “What could be inflaming her muscles and when did it begin?” Inflammatory myopathy had six geneses listed within its own category. There was only one that applied to my mother’s medical case. It was metal toxicity. My mother had had a hip replacement due to a fall in March 2006, followed by a knee replacement due to an injury 4 months later in July 2006.
After days of trying to connect her mysterious health issues, seemingly unassociated, I unearthed a 5-year timeline while doing my taxes. Scribbled beside my mother’s surgery in 2006, I had written, “Her hands became weak after her knee replacement.” This was a revelation!
Immediately, I acquired copies of her medical records going back to 2005. Then I gathered information in talking with her original orthopedic surgeon’s PA. If the metal in her knee was creating her weakness, then I needed valid research to connect the dots of how the initial reaction catapulted her once-healthy body into a spiral of decline. And now her weakness was spreading; she could no longer walk without assistance. I needed to link the research and present credible information and my theory to the neurologist, with whom she would meet again in a few days.
As I continued specific research on metal implants, I uncovered a wealth of medical information from European countries, with decades of clinical studies presenting cases identical to my mother’s. More specifically, the same types of metals identified were also in my mother’s knee replacement; chromium, cobalt and nickel. In some patient cases, the hypersensitivity to these metals was linked to organ failure and possibly even cancer within five years. Based on these reports, I became convinced that if my mother’s knee replacement were to be changed to a different type(s) of metal (we didn’t know at the time it was called a “revision”), then her muscles would recover or at least stop deteriorating. That was my theory.
In 2009, my idea was considered farfetched. To my surprise, the neurologist at the university medical center encouraged me to “go with your hunch.” He understood the premise of my thinking. He knew her muscle tissues were dying based on the appearance of her muscle biopsy. He urged us to seek her original orthopedist for further medical care.
After mentioning possible “metal toxicity” to the original orthopedic surgeon’s receptionist, we had an appointment the next day. I armed myself with copies of the case studies I had uncovered.
We arrived, fully equipped and ready to work with the orthopedist, believing he would welcome the data and help my mother. She was the last patient to be called before the office closed for lunch. The surgeon had always required an x-ray of my mother’s replacements before seeing her. This time, we were escorted directly to the exam room. The PA entered, leaving the door open.
The PA asked my mother why she was there. She shared her symptoms of severe weakness and a clicking noise that had just begun in her knee replacement. She stated that it felt loose when she walked and how sore her knee had become in the past few weeks. The PA made notes and exited.
In a few minutes, the surgeon entered, again leaving the door open. He also questioned why my mother was there to see him. She repeated her symptoms and he began an evaluation of her knee. I held off presenting my theory and the evidence until I heard his opinion.
He began his exam by pushing his thumb on the area where the replacement stem connected below her knee. She yelled, “OH that hurts!” My mother was never one to get above a normal voice tone, much less shriek with agony. She was obviously hurting. The surgeon continued to twist her knee from side to side. She again stated that he was hurting her leg. Upon completion, he sat down on a stool and while looking directly at my mother’s leg instead of her face, said, “I don’t think there is anything wrong with her knee replacement.”
He certainly didn’t believe her knee replacement and weakness were connected. He said it was normal to have some pain and discomfort after some replacements, and they are rarely pain-free. This was a stark contrast to their first discussion when he explained how her bone-to-bone degenerative pain would be relieved with a knee replacement. Since day one, she had pain with her knee replacement, sharing this repeatedly with the surgeon.
My mother’s expression showed her disappointment. She asked me to share my findings. I handed him several pages of medical journals and other information. Although he had never heard of metal allergies from a joint replacement, he seemed interested and appreciative as he flipped through the pages. Then he asked me, “What do you want me to do? What is the next step of action to take?” He was sincere, facing me as if I were a medical colleague with answers to this crisis. I suggested my mother go to a hospital for further testing as was done in the published studies. He pondered the idea. He said he was concerned about the CPT billing code conflict. He wasn’t sure how to admit her. He suggested we go to an ER, and have them call him. I was stunned with his reaction. He stated that he didn’t know of any labs in the South that could do metal allergy testing. He suggested the Mayo Clinic. I suggested a knee revision!
He asked for us to wait while he called a colleague and old college friend who did revisions. After almost an hour, he returned with the name and phone number of his colleague, hand printed on a sheet from his prescription pad.
We believed we were being referred to an orthopedic surgeon who was far more advanced in revision surgeries and metal allergies. He was not.
When I called to schedule an appointment, we were given the option of waiting either two days, or eight weeks. We chose two days. The nurse on the other end of the phone curtly demanded that we bring all of my mother’s medical records, x-rays, and any other test results.
We arrived hopeful for solutions. Within a short time my mother was called for a knee x-ray, after which we were escorted to an exam room. Within a few minutes, the nurse told my mother to get on the exam table and left her to perform this difficult task without any assistance.
The surgeon entered about one hour later. His demeanor was harsh, betraying skepticism before either of us said a word. My mother tried to answer his questions as best she could. He interrupted her remarks as if she were a witness for a prosecutor. It was obvious this was not going nearly as well as we had hoped.
Jerking the exam table away from a wall to get to her left knee, the surgeon pushed my mother down from a seated position without any warning. He began applying pressure in what was evidently a painful spot, while asking, “Is this where it hurts?” She screamed as tears began to form in her eyes. He moved her knee from side to side as if it were a piece of machinery and not connected to nerves, muscles, and bone. It was obvious she was in pain, trying to hold back her tears. He had never asked about any details or symptoms. It seemed he had already solved this medical mystery.
The surgeon finished his exam and sat down, never helping my mother back to a sitting position. I rose from my chair to help while she was struggling not to fall off the exam table. He proceeded to the sink as if he were literally washing his hands of the entire ordeal. At this point, my mother asked me to present my theory and evidence. Hesitantly, I began to show him the data, sharing extra copies. He grabbed the papers from my hands as if I had incriminating evidence. He asked me where I got my information. I answered, “On the internet.” He said that was not a reliable source.
He exited the room fuming. For the next few minutes, my mother and I quietly sat while waiting on his return. We looked at each other bewildered.
When he returned, he informed us that there was nothing wrong with my mother’s knee replacement. We didn’t try to convince him otherwise. We left, as my mother limped in pain while leaning on me.
We weren’t trying to blame anyone or seek legal action. My mother needed help and quickly. One of our cousins is a family practice physician. On the ride home, she called him to share her experience. Our usually calm and gentle cousin was outraged. He said he would make arrangements for her to see another orthopedic surgeon.
In a few days, she was again examined. This orthopedic surgeon, although also skeptical, was willing to consider a revision because of my mother’s apparent pain. He too denied any possibility that her knee replacement had anything to do with metal allergies.
To keep a check on her labs, my mother met again with her primary care physician. She shared her sorrowful experiences. He suggested another orthopedic surgeon in the area.
Two weeks later, we met yet another orthopedist, our fourth. This one was a subspecialist in adult joint replacements. He had trained in hip resurfacing in Birmingham, England. He took time to sit in the exam room with us as he read her medical records. He reviewed her x-rays and bone scan. He immediately understood her condition, the studies from Europe, and my theory. He said he was aware of metal allergies and had performed revision surgeries due to metal allergies before. He looked at my mother, asking one question, “When would you like to schedule a knee revision?”
The day of my mother’s knee revision arrived and she was taken to the operating room. Four hours later, the surgeon met with our family in a private room. He said, “It was a failed prosthesis. The metal never adhered to her bone and muscle. The top part fell out into my hands and the bottom part easily pulled out.” She had walked on a failed prosthesis for 37 months.
As her health began to stabilize after this exhausting journey, my mother returned to the neurologist at the university medical center for a followup visit.
In January 2011, he examined her physical strength and believed her muscles had stopped deteriorating.
In February 17, 2012, my mother returned for another followup. She passed the physical strength tests, showing tremendous and much unexpected improvement. The neurologist examined her left arm, where the original complicated muscle biopsy had left considerable weakness, discovering her muscle tissue had begun to regrow and get back to its baseline. He deemed her case a non-clinical (only known case) medical breakthrough. At her next appointment with the neurologist in January 2013, she greeted him with a bear-hug, picking him up. He was elated.
Today my mother is driving, doing household chores, active in social events, and plays the piano for community occasions. “Steel Standing” is her true story which I penned to share an unprecedented and compelling medical case, which correlates seemingly unassociated health issues directly to metal allergies.
1. Keegan, G.M., Learmonth, I.D. and Case, C.P. Orthopaedic metals and their potential toxicity in the arthroplasty patient: A review of current knowledge and future strategies. Bone & Joint Surg (Br) 2007; 89-B(5):567-573. ↩
2. Keegan GM, Learmonth ID, Case CP. A systematic comparison of the actual, potential, and theoretical health effects of cobalt and chromium exposures from industry and surgical implants. Crit Rev Toxicol. 2008;38(8):645-74. doi: 10.1080/10408440701845534. ↩
3. Davis CC. Steel Standing book website. Available at: http://www.steelstandingbook.com. Accessed June 3, 2013. ↩
Copyright: © 2013 Christa Carmell Davis. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
2 Responses to “Steel Standing: Metal Meets Muscle; A Patient’s Perspective”
. Stephanie Miller says: June 7, 2013 at 7:47 pm Christa, thank you sharing your mother’s story. It bought tears to my eyes. It’s a very powerful reminder of the importance of patient engagement and the role of carers. Kind regards, Stephanie Reply
chad lehan says: June 10, 2013 at 9:39 am Hello, I have been battling the same issue with my wife. Only her metal toxicity is cause from 11 cironary stents that can’t be removed. Turns out if you can’t wear earrings because of a metal allergy, you shouldn’t get ANY metal installed. It’s amazing the amount of denial doctors possess. It’s not a new subject. Certainly WELL documented.