The Beginning

I'm hoping this blog will help chronicle my journey with Tarlov Cyst Disease, and if someone with my condition stumbles across this blog, maybe it will help them in their journey also.

First, a little bit about me. I'm a 54 year old female, living in Ponder, Texas. Ponder is a small town just north of Ft. Worth and west of Dallas. I have the most wonderful, thoughtful husband that I could ever imagine. We are empty nesters. We have two beautiful daughters, who have found the greatest guys ever. Our oldest daughter is pregnant with our first grand baby. We find out at the end of July if it will be a boy or girl. It's like Christmas all over again. I wish I were a great writer, like some of the bloggers out there, but I'm not. I just want to get my story out there and hopefully connect with other people who suffer from this rare disease, to bring a shoulder to cry on, or just listen to your fears. Like most of you, I have never heard of Tarlov cysts, let alone all the ugliness it brings not only to yourself, but to those around you. I believe my problems started back in 2006, when I threw my back out and tripped over our dog and landed straight on my rear all in the same day. This was my first experience with epidurals. I had three in a row, two weeks apart. This was prescribed by a neurosurgeon. Actually first was the always prescribed physical therapy,that seems to make things worse. I also had an MRI, I would love to have access to that MRI now. Did it show a Tralov cyst then? I won't bore you with all the other details of my life, with many epidurals, painmeds and such. We will fast forward to 2010 - 2012. My job requires sitting all day at a computer. I started noticing pain once again coming back. I went back to my pain management doctor and he ordered an MRI. The MRI showed disc bulge at L4 and herniated at L5 /S1. He said the only step from here was surgery. I took my MRI to one of the top neurosurgeons in North Texas (at least he thinks he is). He basically said surgery would not help me. I felt two inches tall for basically wasting his time. So, another round of painful physical therapy and epidurals. This is when things start to go south. I decided to have spinal decompression on the DRX9000. You pay a ton of money for 15 sessions. At first things were great, I was feeling better. But, after about session 5, I started noticing that it was a little difficult to raise my leg to put my sock on. After a few more sessions I couldn't raise my leg at all. I talked to the doctor and just increased the force of pull on the machine. After about two more sessions, I could barely walk after getting off the machine. I told the doctor I could not do this anymore. I did get a partial refund. By the way, the doctor did look at my MRI. I believe the decompression is what started the irritation to my cysts.

What are Tarlov Cysts?

Tarlov cysts (hereafter referred to as TCs) are also known as perineural/perineurial, or sacral nerve root cysts. They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid (hereafter referred to as CSF) that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum. The sacrum is a fused triangle-shaped bone comprised of the five sacral vertebrae forming the base of the spine. The five lumbar vertebrae are located just above the sacrum, and the four coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone. Perineural cysts can form in any section of the spine; a number of patients have cysts at more than one location of the spine and a number have cysts at multiple locations. Some patients have cysts at all sections of the spine, including cervical, thoracic, lumbar, and sacral. My viewpoint: There are nerves coming out of your sacrum. The bone before your tailbone. The nerves have fluid going in and out of them daily, from your brain. Sometimes a nerve will get clogged and fill up like a balloon. The balloon also has nerves running through it.! Making surgery very difficult. That is why there are only a handful of surgeons that will touch them, for fear of severe damage to the patient?  


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