Post-Pandemic Frustration Blues
A year prior to the pandemic, I was struggling with painful recurring scrotal infections. Three different urologists suggested surgery, but no one wanted to do the complicated procedure. Then came the pandemic. My latest urologist treated me with medications. All went well enough. Then, at the beginning of 2023, the hospital urology clinic suddenly closed due to pandemic-related financial disaster. My favorite urologist — and others — disappeared. I haven’t seen or heard from him since. Two months later another scrotal infection came out of nowhere. Emergency surgery to remove a huge abscess took me down. The pain was unbearable. I was bedridden, in daily pain, for the next nine months.
Two more surgeons have told me I need surgery to correct the cause — a fistula that drains from my urethra to my scrotum — but both providers say it is a high risk, 6-hour procedure. Chances of failure are as much as 50%. A consulting vascular surgeon agreed, advising me not to take a chance on the surgery. My age (78), spinal cord injury, full-time wheelchair use and history of circulation problems made it too risky, he said. I had two options: agree to the high-risk surgery that could leave me worse off, or do nothing. “Sometimes,” said the vascular surgeon, “better is the enemy of good” — meaning since the latest infection had resolved, just accept it as “good.”
What is “good”? What does any doctor know of my everyday struggle with chronic pain and how it has severely damaged my quality of life?
I found a certified pain specialist who knows the mysterious world of chronic central neurological pain due to spinal cord injury. I spent a full hour consulting with her after a painful trip that resulted in even worse pain for the better part of that week. Now I have a plan of care, complete with suggested specialized pain meds and optional treatment options. Since she was the director of a major metropolitan pain care clinic, she referred me back to my primary care physician, so he could follow up.
Join Our Movement
What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
Become an Advocate
My PCP would not prescribe the meds because it had been more than a year since I last saw him. It didn’t matter that he had referred me to the pain care specialist in the first place. No matter that the pandemic had made it nearly impossible to get an appointment during that time, and that I had been bedridden for nine months, had lost the ability to drive and lived in a rural area with no public transportation, no Uber or Lyft, no reliable taxi service, and was wracked with chronic pain. All that mattered was he had to see me in person to prescribe the meds.
What about a virtual appointment? No, he had to see me in person. What about the fact that there were no wheelchair accessible exam tables at his clinic and nurses would not lift me? No, he had to see me in person. What about the fact that when I had seen him before the pandemic, he never examined me, just took my BP and asked questions? He could just as easily do that virtually, couldn’t he? No, he had to see me in person.
Now I am waiting to fit into his busy schedule. By the time I actually roll into his office, I may need not only specialized pain meds but a super strong sedative so I don’t throw a Guinness World Record tizzy fit.
Hopefully, the value of virtual medical appointments for those of us with complicated medical needs will finally be universally recognized and respected by our healthcare providers. I sympathize with those doctors who had a thankless job during the pandemic. But if providers continue to ignore our right to equal health care, then we need to rise up and sue them. That is the only way the ADA will ever be enforced.