A Sherman resident is happily back to skiing after being successfully treated for a rare spinal condition — so rare that it only affects one in every 200,000 people.
Drew (whose name has been changed for this story to maintain his privacy) began experiencing leg weakness about three years ago. First dismissing the symptoms as simply being tired, he began having trouble on the skiing and hiking trips he regularly undertakes.
“I thought I had Lyme disease,” he said. “Then I thought maybe it was a reaction to the statins I was taking.”
Over the next several months, Drew’s symptoms continued to worsen, as the numbness, stiffness and weakness in both legs, mostly from the knees down, continued to increase to the point where he had trouble walking up and down stairs.
A trip to his primary care provider resulted in a recommendation that he see a neurologist. David Greco, a neurologist at Associated Neurologists PC and is affiliated with Nuvance Health’s Danbury Hospital and New Milford Hospital, gave him a noninvasive neurological exam, after which he recommended an MRI and an electromyography (EMG), a diagnostic procedure to test for muscle and nerve problems.
The MRI was done at New Milford Hospital and reviewed by Joseph Santoro, a radiologist who specializes in vascular and interventional radiology and neuroradiology. Santoro and Greco diagnosed what appeared to be a spinal dural arteriovenous fistula (SDAVF), an abnormal connection between an artery and a vein located near the covering of the spinal cord.
Within a day of discussing the SDAVF with the doctors, Drew was sent for a consultation with Joshua Marcus, one of the only neurosurgeons in Connecticut with advanced training in endovascular surgery and interventional neuroradiology. Marcus — one of the Business Journal’s recent 40 Under 40 award winners — practices out of Neurosurgical Associates of Southwestern Connecticut and performs surgeries at Nuvance Health’s Danbury Hospital and Norwalk Hospital.
Marcus “explained to me that it wasn’t exactly an emergency,” Drew recounted, “but it needed to be treated quickly.”
“If left untreated, Drew could experience serious neurological decline, including paralysis from the waist down,” Marcus confirmed. “The bad connection between an artery and vein near Drew’s spine resulted in too much blood flow to the vein. This caused swelling and put pressure on the spinal cord, which is why Drew had muscle weakness in his legs. I recommended surgery as soon as possible.”
“He asked me what I was doing the following Tuesday, and I said, ‘I guess I’m in surgery,’” Drew laughed.
During the four-hour surgery, Marcus performed a laminectomy to relieve pressure on the spinal cord nerves and then disconnected the malformed artery and vein. A follow-up angiogram conducted the following day confirmed the SDAVF was gone.
Four days later Drew returned to his home where he left his walker in the garage, never to be used again. Within a couple of weeks he was walking on a treadmill and eight weeks after the surgery he was back on the slopes in Vermont.
“I started off on the beginners’ slope, but I was doing the Black Diamonds slopes within a couple of days — very carefully,” he added with a laugh, “but I was still doing it.”
“Even though it’s rare … I’ve performed the surgery on three people in a three-month period,” Marcus said. “Normally, doing one a year is a lot.”
Marcus noted that the condition is more common in men in their 50s through 70s — Drew is 65 — and the condition is often misdiagnosed and underdiagnosed because symptoms can be vague and mirror many other types of medical problems.
Due for a one-year, follow-up exam in January, Drew is confident he’ll pass with flying colors.
“I still have some residual stiffness and a little bit of numbness,” he said. “But that’s not keeping me from doing what I like to do. I’m going on a six-day ski trip to Austria in a few weeks.”