Tarlov's disease is a surprisingly common condition that most people have never heard about. Causing "perineural" (along the nerve) cysts in the sacral (at the base of the) spine, Tarlov cysts can lower back pain that just won't go away, along with a loss of sensation in the feet. Symptoms are made worse by standing, walking, or climbing stairs, but improved by lying down. Sometimes mistaken for kidney stones, this condition can but doesn't always interfere with bladder or bowel function or both. The cysts can grow to "giant" size that requires surgical removal, but they often stay small and cause no symptoms at all.
These perineural cysts start as a leak in a blood vessel next to the spine, or as an injury, or as a congenital defect in the spine. The cyst "sucks" fluid out of the spinal column and grows larger and larger. The position of the cysts usually means they don't interfere with movement, but they can cause intense pain or loss of sensation from the extremities.
It's not easy to diagnose Tarlov cysts. For your primary care provider, part of the problem is the sheer number of names for them: perineurial cysts, nerve root diverticulal. meningeal cysts, sacral cysts,arachnoid cysts,and arachnoid pouches. Moreover, most radiologists don't have experience with them. Contrast dye has to be given 30 to 60 minutes before a CT scan, or they will not fully show up on the X-ray. Some contrast dyes do not penetrate the cysts for several weeks, when their connections to the spine would be visible on film.
Sacral perineural cyst disease was first diagnosed by the Canadian physician I.M. Tarlov at the Montreal Neurological Institute in the 1930's. Studies of cadavers have found that between 4.8 and 9.6 percent of the population has these cysts, although they do not always cause serious symptoms.
Most neurosurgeons don't operate on Tarlov cysts. It is harder to find a surgeon in smaller countries, not just in smaller cities. In 2011, the province of Ontario paid for a Canadian woman's surgery in the United States because it was impossible to find a surgeon in Canada.
In the case of Canadian patient "Rose," who asked that the media not reveal her last name, neurosurgeon Dr. Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose's Tarlov cysts, wrote the provincial health plan's appeal review board that the surgery is extremely intricate, complex and a "very scarce commodity."
"There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery," he wrote. "I am one of those surgeons."
The appeals board agreed. However, since that decision, the Ontario Health Insurance Plan called the Excellent Care for All Strategy has sought to save about $30 million per year by allowing Canadian surgeons to do operations "within their scope of practice" even if they are not expert in them.
Canadian citizens can still argue that they need their provincial health insurance to pay for surgery in the United States because surgeons there have more experience with the disease, and there are likely to be fewer complications that would result in even greater expense to the Canadian insurer. However, it is harder and harder, nearly impossible, to get approval for the health plan to pay for surgery in the US. It may help if you make your case not just about the problem of finding an experienced surgeon, but also the need for experienced radiologists and other diagnostic professionals.
It isn't always necessary to remove the cysts. Sometimes it is possible to drain them. The minimum amount of surgery results in the minimum number of complications, and the least treatment needed to stop pain is best.
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