Tarlov Cysts: Incidental Findings?

That’s what Tarlov Cysts are usually called. Incidental Findings; Something found that does not relate to the symptoms, which brought about the need for the diagnosing MRI or CT. Something unexpected, something found by accident.

When I came online and did a search for the meaning of “Incidental Finding”, the first thing that popped up was an article published by the Globe and Mail, dated September 28, 2010.

I have added a link to this article in the links column to the left of this page, which is exactly where I think this story, belongs.  Why? Because for Tarlov Patients one of the first things we hear when we’re told about the cysts growing on, or in, our spinal cord is, “there was a spinal cord cyst found in the MRI, but it’s an incidental finding. It’s nothing to worry about.”

Let me ask you, the common person, not the Physician or the specialist. If I was seeing a physician for severe neck pain and cramping, nerve pain and weakness in my arms, shoulders, neck and hands then I would think hey, maybe this is what’s causing my problems…Or if we did this test looking for an explanation of why I can’t sleep at night and when I do manage it, I wake up with an unbelievable headache, then I would automatically think that a cyst found on my spinal cord in the left, C5-6 area might have something to do with my symptoms. Especially if that cyst was located dangerously close to my left vertebral artery. If that was the case then I don’t think I would still consider this cyst as merely an incidental finding and, “nothing to worry about.” In my personal story that was exactly what happened. That was the case.

Once I knew I had this cyst, and I have to admit I’d never even heard the word before, I came home, did some research and found out that if you have one spinal cord cyst then chances are you have more.

When I underwent another MRI, this time for the Lumbar/Sacral area; again the report said, “Incidental Finding”. Again, I have to ask you. If you had over five years of low back pain, consistent nerve pain in your legs, bladder retention, bowel issues and weakness in the low back and legs, then would you not think these symptoms might have something to do with the giant Intradural Meningeal Cyst that was presently destroying your entire sacral canal? The same cyst that, according to the radiologist report claimed, “the cyst completely replaces the central canal, and nerve roots inferior to the S2 are not well visualized, likely displaced by this cystic lesion.”  Likely displaced?

During my trip down the Tarlov Road I’ve learned so many things that truly shocked me about our medical community. One of those major shocks came from medical terminology, and I’m not speaking about the complex medical names or procedures themselves, I’m referring to the not so simple use of the English language. Sometimes I feel that as I read these medical journal entries I am reading legal literature with terminology and procedures that detract from the laymen’s ability to comprehend what is actually being said. It’s like a word puzzle. Something simple said in a difficult way with the major goal of making you feel stupid and unable to question the specialists who will, or will not, speak to you about your diagnosis. Unfortunately, for myself and the many other Tarlov patients around the world, we’ve found many more Specialists who wouldn’t talk about this diagnosis, over the ones who would.

It seems that in Ontario, Tarlov and related spinal cord cysts are a topic that most Doctors within the medical community would prefer to avoid. Mind you, considering what I and others have been told when someone does take the time to talk, I think I’d rather them not say anything and wait for a proven, in practice specialist to speak to me about a diagnosis they’ve worked hard to understand.