BLOG: When the Doctor is the Patient: Getting Older and Shorter
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In a post from April about my struggle with osteoporosis, I wrote about my own case of the disease, which was unique in many ways.
For one, my osteoporosis was much more severe than that of the vast majority of my patients with osteoporosis. Also, osteoporosis is typically thought to be rare in men.
Related to the above — and disappointing for understanding my own case — the vast majority of osteoporosis literature is about osteoporosis in women, both pre- and post-menopausal. Very little literature about men’s osteoporosis has been published.
These latter two realities are particularly painful, to me as both a doctor of male patients with osteoporosis and for myself a male patient with osteoporosis.
Last week I attended our state’s annual endocrine symposium in beautiful Traverse City, Michigan, a gorgeous resort destination on Lake Michigan, which is famous for endless beaches with splendid dunes for the summer and a ski resort for the bitterly cold winter. In the Q&A break of a metabolic bone session, I raised my hands and asked a question to one of the two speakers.
I opened the question with this: “I wish to ask a question as both a doctor for my patients with osteoporosis and as a patient for my own osteoporosis ...”
I asked, “What I should do now?”
I explained that my osteoporosis is still severe, and I have taken bisphosphonates, teriparatide (Forteo, Eli Lilly; Bonsity, Alvogen) and now denosumab (Prolia, Amgen). Should I switch to the newest, more powerful medication, romosozumab (Evenity, Amgen)?
The speaker answered that, unfortunately, there are no data on romosozumab for men, which did not surprise me. He added that even if you wanted to take it as an off-label treatment, insurance will not approve it — and that medication is very expensive.
Further, my own osteoporosis had a mysterious, elusive, initial presentation. In the summer of 2014, I sustained an unprecedented sudden, acute and excruciating back pain that lasted a few weeks, following a biking ride with my kids around Mackinac Island, Michigan. I initially thought it was a herniated disc.
When the MRI was ultimately done — in view of persistent back pain refractory to pain killers, NSAIDs and physical therapy — it showed a Schmorl node or Schmorl phenomenon. No major disc herniation was found, except for some degenerative disc disease, which is not uncommon.
At the time, this weird “Schmorl” node/phenomenon was described in the radiology literature as an asymptomatic, nonsignificant incidental radiology finding. But the back pain continued, and it became nightmarish, as I wrote about in prior posts.
Finally, I called my friend, the late Dr. Daniel Duick, in Scottsdale, Arizona.
Dan told me to get a DXA scan.
“Why?” I asked. “Why would I have osteoporosis?”
The DXA did reveal that I had osteoporosis, and my T-score was –3.9, which means severe osteoporosis.
That Schmorl node turned out to be a form of compression vertebral fracture. The eleventh thoracic intervertebral disc had collapsed into the twelfth thoracic vertebral body. In my case, the Schmorl node turned out to be a real thing, caused by the bumpy bike ride around Mackinac Island. In fact, recent literature suggests that Schmorl nodes are common among older men, with a prevalence of 41% in one study, and among men of Middle Eastern background, 88% were associated with osteoporosis or osteopenia. I am originally from the Middle East.
You can see that by all measures, my own case of osteoporosis has been unique.
The diagnosis of osteoporosis is made by a relatively old x-ray imaging study, the DXA scan — dual-energy x-ray absorptiometry — to determine bone mineral density.
It is intriguing and perhaps frustrating in some ways that DXA has been the only diagnostic tool for osteoporosis. This technique was invented by John Cameron, from the University of Wisconsin in the 1960s. In a funny opening of a 2013 article on the website Irish Health Pro, Eimear Vise wrote: “’There are now over 50,000 bone densitometers in the world. I doubt if more than 50 radiologists in the world know who invented the instrument,’ declared the late John R. Cameron, a pioneering medical physicist from Wisconsin, U.S., and the father of the modern dual-energy x-ray absorptiometry scan — today’s established standard for measuring bone mineral density. ‘I learned from Dr. Lester Paul, chair of radiology at the University of Wisconsin, that there was no method to detect early osteoporosis and many women were dying each year from broken hips. I invented bone densitometry in the early 1960s. It was of little interest at first because there was no known treatment. My invention was used to evaluate the different possible therapies,’ he explained in an interview with Radiology Malaysia in 2004, a year before his death. ‘I have the satisfaction of knowing I did something useful for society.’”
I have struggled tremendously with my own case of osteoporosis, in many ways, not the least being the struggles with insurance to approve DXA scans more frequently than every 2 years; the pre-authorization of the more powerful, but more expensive, medications; and experiencing what it is like to be a patient.
But what saddened me the most about my own osteoporosis was losing height. I used to be a proud tall man of more than 6 feet, and now I am barely 5’11”. I had to shorten all my pants.
References:
Othman M, Menon V. Osteoporos Int. 2022;doi:10.1007/s00198-022-06316-y.
Vize E. Evolution of the DXA scan. 2013. Available at: https://www.irishhealthpro.com/content/articles/show/name/evolution-of-the-dxa-scan#:~:text=I%20doubt%20if%20more%20than,bone%20mineral%20density%20(BMD). Accessed October 18, 2022.
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