Who on Earth is Tarlov, and How Did I Get His Cysts?

Yesterday I went back to the imaging center for my second MRI of my lumbar spine. This time it was done with contrast dye, which I had a mild adverse reaction to (burning sensation, nausea, etc). Once my body calmed down after the dye was injected, the MRI was pretty simple.

This afternoon the results made it in to my primary care doctor, and his nurse called me with the results. She said that there is no visible spinal disc compression, but I do have Tarlov Cysts in the sacral region of my spine. She said that I should come in next week to discuss my treatment plan with Dr. J. Because I am impatient and curious, I did a little Google sleuthing to find out more info on Tarlov and his cysts.

Tarlov Cyst (Perineural Cyst; Sacral Nerve Root Cyst)

Definition

Tarlov cysts are abnormal sacs of spinal fluid that usually form at the lower end of the spine (sacrum), or tailbone area. In most cases, they do not cause symptoms. But, if a nerve area is affected, you may experience pain.

Causes

The cause of a Tarlov cyst may be related to:

  • Trauma to the spinal cord
  • Increase in the cerebrospinal fluid pressure
  • Blockage of cerebrospinal fluid

Often times, the cause is unknown.

Once you have a Tarlov cyst, the following may cause it to become painful:

  • Traumatic injury such as a fall, automobile accident
  • Heavy lifting
  • Childbirth
  • Epidural anesthesia

Symptoms

Most Tarlov cysts do not cause symptoms. If you have any of these symptoms, do not assume it is due to Tarlov cysts. These symptoms may be caused by other conditions. Tell your doctor if you have any of these:

  • Nerve pain
  • Pain in the lower back, buttocks, legs and feet, vagina, rectum, or abdomen
  • Pain when coughing or sneezing
  • Weakness, cramping, or numbness in the buttocks, legs, and feet
  • Swelling, soreness, or tenderness around the lower end of the spine (sacral area)
  • Abnormal sensations in the legs and feet
  • Sciatica symptoms, such as pain when sitting or standing
  • Headaches
  • The feeling of “sitting on a hard surface”
  • Pulling and burning feeling in the tailbone

Treatment

Most of the time, Tarlov cysts do not require treatment. Treatment options include:

  • Corticosteroid injections or other medication injections—to relieve pain
  • Prescription medications—such as pain medications, antiseizure medications or antidepressants (both of these may be used to treat pain)
  • Lidoderm patches—applied to the sacral area to provide temporary relief of pain and discomfort
  • Aspiration of the cyst—a needle is used to drain the cyst to relieve symptoms
  • Transcutaneous electrical nerve stimulation (TENS)—electrical impulses are delivered through the skin to help control pain

In rare cases, surgery may be done if symptoms are severe and the cyst has caused changes in the bones of the sacrum. Surgery involves removal of a thin layer of bone and the cyst.

I’m not sure what all of this means for me at this point. I’m not informed of the details, and will iron out a treatment plan with my doctor next week. I’m going to do my best to keep a good balance between rest and activity, and hopefully this condition will dissipate on its own. I REALLY hope it’s temporary. My mother has been dealing with chronic pain issues for well over a decade, and I don’t want to have a life where pain chains me to the bedroom. On one of the info sites, in interesting letter was written by a nurse who deals with Tarlov Cysts. I don’t see myself sending it out to friends and family, but it scares me a little that I might have to live life like this.

  • Are you in a lot of pain?

  • Uh yeah. Lots and lots of pain. I’m pretty good at faking a smile, but most days since early December have been beyond miserable.

  • I’m so sorry to hear about this. My husband has several degenerative discs in his spine and I know that back pain really bites. I hope you get things sorted out!

  • I’m glad you at least have a name for the pain, although I’m sure you’re not really “lov”-ing it.

    I hope the treatments work, and you don’t have to experience life like the RN that wrote that letter.

  • Hi, this was a very interesting post. I am quite impressed with your knowledge, and wanted to let you know that you did a fine job. However, I do have some unanswered questions that I would like to ask you. I will contact you via email so that you can clear some of these things up for me. Again, very well written article. Keep up the good work.

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  • J. P.

    Since this was written in 2010, I am wondering what has happened to you since then? From looking at the rest of your posts, it seems that you have been able to live a “normal” life. What has been done with the cysts? My wife has 5 LARGE ones (one is golf ball size) and we have an appt. with a surgeon this month. There are only 4 surgeons left who work on these…
    So an update would be helpful. The nurse who wrote the letter has be VERY helpful. She is probably the most knowledgable person in the US on this condition and knows the surgeons real well. The one in Texas has the most experienc….alas, he’s in texas and we are in Ca.

  • Ruth Ventrello

    Hi, I have TC’s too. How are you now?

  • After more MRIs and visits with a neurosurgeon and orthopedic surgeon, it was decided that they were not TC’s after all. I went to move physical therapy, got cortisone injections, and lost some weight. After a few months the pain went away.

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