It's the middle of the night. As everyone else sleeps, I'm awake, not by choice, but by pain. Tarlov Cyst Disase. The ugly name of my pain. Until recently, my pain had no name. Well, it had names, whichever choice word I chose to call it on any particular day. Some names not so nice. I should be thankful that I finally have something to call it. But, nothing about this disease makes me thankful.
Several years ago, my first symptom reared its ugly face. At the time I didn't know that was the beginning of a long journey. Bladder pain. Burning, spasms. Many trips to the family doctor and always the same answer. You don't have a UTI, but there is a trace of blood in your urine. I was eventually referred to a Urologist/gynecologist. Every test was done from CT scans to scopes. No definitive diagnosis. So, I just learned to deal with it.
The next sympton was low back pain. I often ignored it. I'm getting older I told myself. I must have worked too hard. The tile floors are hard on my back. Seemed logical.
One day, after standing still on the playground at school, as I began to move my right leg collapsed with a horrible pain in the middle of my right butt cheek. Sharp, shooting pain. It was brief, but got my attention. What in the world could cause this? Disc issues in back? This started my quest to find out what was diminishing my quality of life.
The collapsing leg continued. As soon as school was out for the summer, I met with my family doctor once again. He ordered a MRI. Osteoarthritis, Degentrative Disc Disease, buldging disc at L5-S1. However, none of those were considered bad enough to cause my pain or leg collapsing. Next step, see a pain management doctor. 3 injections of steroids, no relief.
Next stop, a neurosurgeon. He speculated that perhaps I had sacroiliac joint dysfunction. Another MRI. Results showed no joint issues. Bone scan, no issues. You do have a tarlov cyst, but those are rarely symptomatic. WAIT, What? Cyst? Tell me more. Tarlov cysts are fluid filled cyst that form on spinal cord. The cysts are filled with spinal fluid. Why am I just hearing about this? Later I found out because most doctors are trained to believe that these cysts do not cause issues. I returned to my pain doctor and he told me about a doctor in Dallas, TX who specializes in these cysts.
Research, research and more research. Dr. Frank Feigenbaum at the Tarlov Cyst Foundation believes these cysts are symptomatic and treats these cysts. I will travel there on June 11th for a consultation. Surgery is really the only option. I've read all of this doctors reports. Some doctors may offer to drain the cysts, but they just fill up again. Some doctors will fill the cyst with fibrin glue, only a temporary fix. This doctor came up with a method to remove them by using a sleeve to wrap them in. There are only 5 doctors in the United States and only 9 worldwide who will perform this surgery. I'm lucky Dr. Feinganbaum is in Dallas, a four hour drive. Many people come to see him from all over the United States and world. I joined a support group on Facebook called the Tarlov Cyst Disease support group. I was dumbfounded. So many people with my exact same symptoms and also at the end of their rope. It felt empowering to know that there are others who feel my pain and know the devastation this disease causes. Because, like many diseases, I look fine on the outside. I don't look sick. I walk slow, but so do many people. No one truly knows the extent of this pain, except my new friends on the support group.
How has this disease affected my life? Many small ways, but the biggest impact is I can no longer do everyday tasks that I use to take for granite. After many attempts to grocery shop, always in pain, I finally gave in and admitted I can no longer walk through the grocery store. The chore I always hated the most is now a chore I wish I could do. Vacuuming is out of the question. Lifting heavy wet clothes out of the washer to place in the dryer is excruciating. Standing at the stove cooking dinner is tough. Truth is, everything is tough. It hurts to sit, hurts to stand, hurts to walk. Laying down is the only real relief. But still, the nerve pain hurts. Restless leg syndrome at night. No real relief, really. I spend on average, 18 hours a day in bed.
I hate that my life has been altered. I hate not being able to clean my house. I hate not being able to work in my yard. I hate not being able to shop. I hate that I can't help others the way I use to love to. I hate being confined to my bed. I hate this disease. I have cried many tears. I have felt helpless, hopeless and depressed. I feel inadequate, a burden, and a hindrance. Sometimes I try to be upbeat, but most of the time I'm down.
No way to live. Not the way I want to live. Will I have to live this way the rest of my life? That's a grimm thought. I do cherish the few good days I may have, but in reality I know it won't last.
Three weeks until time to go to Dallas. The longest three weeks of my life. I pray they go by quickly. I pray the doctor can help me. I pray for a normal life again. And, sometimes I just pray.
