Let the Research Begin

*Please note that this is based off of my interpretation of information I found at the time. New information may have been published that indicate this may be outdated since first published. Many cases go undiagnosed so it is difficult to really tell how many people actually have symptomatic Tarlov Cysts.

The same day I found out that I had the TC, I went home and researched it on the internet. I found out that approximately only 4% of the population have these and they are almost always asymptomatic. However, of those 4%, 1% have symptomatic TCs. The more I read about TCs, I learned that it is actually a disease and that successful treatment options were limited. Aspiration of the cysts just resulted in them filling back up with Cerebral Spinal Fluid within hours. A fibrin glue injection technique was used for several years, but the success rate was only about 70% and the complications and risks were serious. The fibrin glue would plug up the hole where the CSF was entering but the fibrin glue could get stuck to surrounding nerves and then there was no way to go in and fix it. This procedure is still used sometimes, but is currently not recommended by the FDA. Several other methods have been attempted.

In my search, I came across the Tarlov Cyst Foundation, which happened to be based here in my hometown of Knoxville, TN! I immediately sent the President a message and said that I had learned I have a TC and am having the symptoms listed. My question was, were there any doctors in my area who could treat these? I was surprised that she called me within 15 minutes. I swear! It was soon. Her name is Reta Hiers and she is the President/Executive Director of the Foundation. She saw that I was from Knoxville and said she just had to give me a call! Patients from all around the world call her and she is usually on the phone all day everyday responding to them. She is a busy lady in high demand! I spoke with Reta for an hour. She is an incredibly encouraging person and a plethora of knowledge when it comes to TC Disease. After going over my symptoms and story, I told her I hadn’t been diagnosed with the disease but they had just been noted on my MRI. She said, “That is a diagnosis. I am so sorry you have this disease.” She went on to explain that the neurosurgical and radiological community do not recognize TCs as a symptomatic disease and I would not find anyone in my area willing to treat them. It is so rare, that many of the doctors do not even know much about it. She prepared me for what my Neurosurgeon would tell me when I saw him. I learned more information from that phone call than I would have ever learned from the internet. She explained the treatment options and that the best is surgical treatment. However, there were only a handful of doctors in the world willing to treat them. Of them, the most experience was Dr. Frank Feigenbaum in Dallas Texas. “Well, what should I do now?” I had the option to send him my MRIs for a remote consultation, which could take anywhere from 3-5 months, or make an appointment to see in person for a consultation, which would take 2-3 months. “Whoa! What!?!?”  I did NOT want to wait 5 months to find out what my options are. I do not want to suffer from these symptoms that have robbed me of my life for any longer than I had to.

We had saved up for my dream trip to Southern England. I had even booked two hotels. I was devastated that I cannot go. But, because we saved for the trip, we can use that money for travel to Texas. A blessing in disguise. God was providing for us before we even knew this would happen.

*UPDATE - Over time, I have learned that it's not really known exactly how many people have Tarlov Cysts or how many of those are symptomatic because of the lack of diagnoses.  As I stated before, please do not take my interpretation of information or opinions as the gospel truth without researching and affirming it for yourself. Blessings!

Here Reta Honey Hiers Explains diagnosis of Tarlov Cysts.