Shedding light on Tarlov cysts

Katherine Lockwitch is used to dealing with pain. Since being hit by a car as a teen, her body has suffered through a multitude of issues. Yet the onset of Tarlov cysts, settling in her entire spine, nearly cost the Ridge Manor resident the complete use of her right leg.

“I was having a lot of pain in my middle upper back,” Lockwitch said. She went for an MRI to figure out the origin of the pain, assuming it was related to her car accident years before. “And they found that I had Tarlov cysts as an ‘incidental finding,'” she explained, “which means they don’t know what it is but it’s something I shouldn’t worry about.”

When her physician received the report, he was uncertain how to proceed with Lockwitch’s treatment. “His exact words to me were that I was a zebra with different kinds of stripes. And he couldn’t identify my stripes,” she remembered.

Her physician then sent Lockwitch to a neurologist who was even less interested in taking her case. “He said there weren’t enough people with the same problem.”

But Lockwitch’s pain grew worse, causing her right leg to buckle at the knee and requiring that she walk with assistance from a cane. She took control of her own condition, researching online about Tarlov cysts and becoming proactive in finding solutions to help relieve her pain. Then she started using a rigid knee brace.

Tarlov cysts, according to the National Institute of Health, are fluid-filled sacs that affect the nerve roots in the sacrum, a group of bones at the base of the spine. The cysts can compress nerve roots, leading to lower back pain, sciatica (shock-like or burning pain in the lower back, buttocks and down one leg to below the knee), urinary incontinence, headaches, sexual dysfunction, constipation and some loss of feeling or control of movement in the leg or foot.

Tarlov cysts may also put pressure on the nerves where the cysts exist, causing pain and gradual deterioration of the surrounding bone. In some cases, like Lockwitch’s, Tarlov cysts can become symptomatic following shock, trauma or exertion, causing the buildup of cerebrospinal fluid.

The American Association of Neurological Surgeons reports that most Tarlov cysts are relatively small in size and, in most cases, cause little to no pain. Yet, in about 7 to 9 percent of the general population – and in more women than men – the cysts can be very large and very painful, leading to immobility and other related conditions that get worse over time.

Many of these smaller cysts remain undiagnosed until a trauma occurs, usually around the tailbone area, such as with a fall.

Symptoms of Tarlov cysts disease may include:

Pain in the area of the nerves affected by the cysts.

Weakness of muscles.

Difficulty sitting for prolonged periods.

Loss of sensation on the skin.

Loss of reflexes.

Changes in bowel functions.

Changes in bladder functions.

Changes in sexual function.

Lockwitch suffered from bladder and bowel problems as the cysts pressed on those nerves, disabling the signals that triggered their emptying. “I was in a lot of pain,” Lockwitch said. “I was unable to maintain mobility.”

In her research, Lockwitch found the Tarlov Foundation, filled out a questionnaire online and was put in touch with Dr. Frank Feigenbaum, one of only a few surgeons across the country who specializes in Tarlov cysts disease, according to Lockwitch.

“He was in Kansas City at the time,” Lockwitch said. So she and her husband, Greg, boarded a plane and met Feigenbaum face to face, who then officially diagnosed her with Tarlov cyst disease. And he recommended surgery.

Lockwitch underwent the surgery in October of 2012 in Texas where Feigenbaum had moved his practice. “He removed two of the cysts that were causing the most problems,” she said.

She was told her full recovery could take up to a year. And nearing the one year anniversary, Lockwitch has made a dramatic recovery. “It’s like night and day,” she said. It was recommended that Lockwitch undergo at least two more surgeries to remove cysts in other areas of her spine.

But not all Tarlov disease sufferers are so lucky. In her search for answers, Lockwitch met another local woman who is fighting her own war with Tarlov cysts. Amy Hans from Spring Hill fell in 2010 at work and began experiencing severe pain in her lower back, near her tailbone, after the accident.

She underwent an MRI, which found Tarlov cysts, like with Lockwitch, as an “incidental finding.” Since her diagnosis, Han has suffered with constant severe pain in her lower back and has problems with parathesia. She also suffers with weakness in her lower extremities.

Hans was battling a workman’s comp case for the injuries sustained in the fall and settled earlier this year. But she continues to suffer from the effects of her Tarlov cysts, which evidently flared up as a result of the work accident. Unfortunately, her insurance does not cover the surgery.

“I have two choices,” Hans said. “I can either be in pain in bed or I can be in pain doing things I love.” She chose to fight for each day, refusing to let her disease define her. But Hans lives in constant pain. “This has become my new normal,” she said.

And she struggles with an uncertain future, knowing that Tarlov cysts may debilitate her completely at one point if she doesn’t get the surgery. Like Lockwitch, Hans’ disease was minimized by doctors because so little is known about it. Many physicians have never been trained in Tarlov cysts and therefore do not know how best to treat their patients’ pain.

Lockwitch uses a service assisted canine to help with her rehabilitation and her physical independence. Her former canine partner, Baron, was hit and killed just days after Lockwitch returned from Texas after her surgery.

But a local breeder and trainer of award-winning German shepherds stepped in when they heard of Lockwitch’s misfortune. Pendragon Acres U.S. K-9 donated a new puppy, born Dec. 12, and is currently raising the $35,000 to train him as an assisted service canine.

Lockwitch named the pup Pendragon’s Prince Tarlov to help bring awareness to a disease that is physically and emotionally draining.

“Tarlov disease has taken so much from me,” Lockwitch said. “He’s helping me get it back.”

Hans struggles to keep her positive outlook intact as she gives back in an attempt to help those who fight a different battle. Hans makes charity quilts, “even though it hurts.”

The two Hernando County women keep close contact, supporting each other in their common battles.

They hope one day to bring enough awareness to the disease so others who find themselves walking a similar path might have an easier time.

For more information about Tarlov cyst disease, contact the Tarlov Foundation at www.tarlovcyst foundation.org

Hernando Today correspondent Kim Dame can be reached at [email protected].