Tarlov Cyst Disease and Pilates

So. I’m gonna just jump right in. Tarlov Cyst disease can be controversial. Many in the medical community believe they are of no consequence. Many who live with TCD are struggling.

What is Tarlov Cyst disease anyway? Tarlov Cysts were first identified in medical literature in 1938 and is now recognized with NORD, national organization of rare disorders. Not much is known about the cause, not much is offered in the way of treatment. As more and more people are diagnosed each year, patients are divided up into two categories. Those who have symptoms and those who do not. One theory is that these cysts develop anywhere along the spine (cervical, thoracic, lumbar/sacral) secondary to trauma, trauma causing cerebral spinal fluid leaks, or inflammatory process within the nerve root sheath. Women are more likely to develop this condition vs men and is often unrecognized or misdiagnosed and so the true number of those effected is unknown, although the current number range in the 4-9% of the population. Tarlov Cysts are fluid filled sacs that affect the nerve root of the spine. These cysts can be anywhere along the spine and vary in size and location, although a high percentage is in the sacral area. Like any cyst that fills and recedes, it can put pressure on the surrounding nerves. Chronic pain is the most common symptom though regardless of location. Those with the condition are constantly looking for ways to relieve this pain, knowing that it is about lifelong pain management.

I was diagnosed with TCD in the summer of 2017 after a fall down a flight of stairs. Was the fall the cause? Had I always had them but didn’t become symptomatic until after the fall? Did the fall aggravate and make an already existing condition worse? Honestly, I really don’t know. Neither do my doctors. At my best, I feel great and no pain. At my worst, I’m bed ridden. Most days I live in between where I have constant moderate pain. It affects my mood, my movements, my ability to parent, work and everything in between. And so its become my mission to find what triggers the cysts to over fill and cause a variety of symptoms, learn how to avoid aggravating them, working to a goal of more pain free days through movement and meditation.

As a Pilates teacher with a medical background, and I am using all my knowledge and my training as a medical researcher to learn more about TCD and how to maintain a healthy movement practice. I do gravitate to daily self care that is more natural. I love muscle melt from Saje and apply it daily to back (L1-S1). Some times I take Tylenol or Advil, although when the pain is not manageable I breakdown and take Naproxen. Each morning I wake up I begin with 30 gentle pelivc tilts and 10 leg overs for each leg. I progress to the floor with a roll down to upstretch to plank, back to upstretch and alternate calf stretches, then to roll up. Every. Single. Day. If I didn’t I would severely regress. I use Incrediwear back brace when I can’t get out of bed. I use the Incrediwear body sleeve when I’m struggling but still mobile. I use Pilates exercises daily to keep my spine flexible and strong because I know without it I’m in trouble. Sometimes I use a salt water bath to draw out inflammation. I am considering an anti-inflammatory diet but do take supplements and Kencko to make sure I get good stuff in my body, because when the pain hits a certain level I really have no appetite and struggle to keep food down. And I walk. Walking is amazing. Which was hard for me to accept. I used to be a runner. Not so much anymore. But who knows? Maybe one day? Its a goal for sure.

I am grateful that I can still move and be who I am most days. I know others are suffering more and are no longer able to ambulate without the use of crutches, canes, or even wheelchair. Some are experiencing bone loss of the vertebrae due to long term pressure from the cysts. Surgery is an option but not a guarantee of a better life, a pain free life. Surgical recipients experience an improvement afterwards, some its actually worse. Belonging to a group of TC suffers helps me to keep things in perspective and for that I’m grateful for as well. We support each other and offer ideas and suggestions of what works and what doesn’t in an effort to help each other. If you have TCD and don’t belong to a group, I highly suggest it. Suffering from this condition can make one feel very alone. Friends and family can struggle to really understand what you go through. So join a group! You won’t regret it. I found mine on Facebook.

And as they say, a body in motion stays in motion. So keep on moving, whether its Pilates or something else. All movement heals.

Interested in learning more about how Pilates can help you? You can find me on FB and Instagram at Gretchen Roscoe Pilates for more information. You can also check out my website at http://www.gretchenroscoepilates.com.