After evaluating all that was presented to me, I had internal goosebumps. Alarms were going off in my head. As I reflect on this story, I'm pretty sure the patient's FOTO report began my thinking journey.
At first glance of the report, I knew something was up... had no clue what was up, but was very, very confident something was up. I don't typically see such a huge difference in the FOTO mean and my patient's actual score at intake. For this particular patient there was a pretty significant difference in those two scores.
"I can see what brings you here today," is how I started my conversation. The 34 year old male used a walking stick and he was totally laterally shifted and even sidebent to his left. His pain diagram indicated left lower extremity radiculopathy. Just by watching him move verified that I was pretty sure his FOTO score was reasonably accurate.
It was then that the alarms were clanging loudly in my head, I did all I could to keep a poker face and remain calm. It is highly unusual for patients to present with a lateral shift toward the involved side. My focus was on understanding all that I could to explain in my head why this gentleman was different.
The chiropractor across the road referred him to me. The patient had no primary care provider. (So... this means he walked in the doors as a self-referral or via direct access.) Since his insurance carrier required signed documents from a physician, he decided that he'd use his hematologist/oncologist in Ann Arbor as the responsible physician. That had me pause and think, "hmmm, interesting."
You will never treat a patient who has the history of this gentleman. He had a blood disorder named hemophagocytic lymphohistiocytosis (HLH). Discussions had begun on attempting a bone marrow transplant. He also reported that he was cancer free as of 3 months ago. Last year he had been treated for T-cell lymphoma.
Are you feeling the sinking feeling I felt? He was adamant that his symptoms were related to a herniated disc. His symptoms were worse than what he experienced 2 years ago, but he was confident all his pain and symptoms were due to a herniated disc.
This situation required me to pull out a "call a friend" card. I truly had no idea why his condition was so extreme. I could only think: some type of mass causing the presentation. Well, the man was in pain and I had to at least try to be of assistance to guide him toward pain reduction. I reached out to David Grigsby. I needed someone who not only had experience with individuals like this but also had a calm, even temperment to get me to focus on what I could try versus my internal fear.
As I mentioned in an earlier post, it isn't easy to bring patient self-report outcomes into a differential diagnosis conversation with physicians. Physicians (especially oncologists) are not used to actually considering something like a patient's level of function. Even when I shared all my concerns in writing and verbally, the oncologist focused on, "he doesn't have cancer, I don't deal with this." I so wanted to scream that he needed pain control and that just because he was "cancer free" in April did not mean he was cancer free now. I wanted a space occupying lesion ruled out and clearly stated it. "Cancer free" was the oncologist's focus.
David's advice and recommendations were quite helpful. The patient began to stand a bit more upright and was able to begin to sleep better. A few weeks ago, he was hospitalized due to a sinus infection. Because of his HLH, he required IV treatments and intense medical assistance to monitor response to treatment. Someone decided to order an MRI. I never saw the MRI report, but when the patient returned after that hospitalization, he stated it indicated a herniated disc.
Of course, in the back of my head, I was wondering: is an MRI the best diagnostic test to determine that his lymphoma hadn't returned? Last week he died. His lymphoma had escalated (lymph nodes, lungs, spleen all affected) to such a degree that none of the attempted chemotherapy treatments created the desired response. The chemotherapy created cellular death and his kidneys began to fail.
The last time I saw him was 4 days before he died. When you treat people long enough, you can do your own assessment of how a person is responding to their pain. His presentation had changed for the worst. The man was stoic - his pain had to have been an 11. He mentioned he thought his left leg felt weaker. I attempted to test his strength, but he couldn't fully extend his knee due to pain... and then, with a flexed knee, when I attempted to assess dorsiflexion strength he had severe pain. He broke out into a sweat.... he had no primary care physician. I contacted a local urgent care and they were not interested in providing pain relief. He refused to go to the hospital. The only thing I could do was set up a referral to an orthopaedic surgeon.
The memory of my experience with him will haunt me for a few years. Could I have advocated for him better? The nurse at the oncologist's office was angry with me for sending a plan of care. She was angry at me for sending my concerns. Did her anger (and lack of knowledge of direct access) blind the communication? Was there a disconnect with including his low functional level with his presentation? I know we're at a crossroad when it comes to opiates, yet at the same time, shouldn't there be some common sense involved to help people? I know that none of my farm animals ever experienced the level of pain he did for the length of time he did.
One thing I do know: I had a lot of objective data at my fingertips to build a case for my concern. I have a feeling the final outcome would have been the same... I just wonder if I could have done something differently.
If you are looking for a product that gives you a report that helps your clinical thinking and is part of your patient's story, look no further. Please talk to Judy Holder about how FOTO can help.