The Start of My Journey

I decided to create this blog to update all my family and friends on my diagnosis of Tarlov Cysts Disease, a rare disease that affects the nerves at the base of the spine, so I will start from the beginning.

In May, 2009, Chris and I were building a bridge over a creek in our back yard. I lifted up a 6x6x12 piece of lumber and thought my body was going to collapse on me. I started having lower back pain. I decided to go to a Chiropractor to see if he could help. I saw him all of June, but did not find any relief. I went to my PCP, whom ordered xrays and exercises. The xrays came back fine and the exercises, I couldn't do past 3-4 days. After the 4th of July party at Frank's, my back was really hurting, so I slept with a heating pad that night. Sunday morning I woke up with extreme lower back pain. I could barely walk, sit, stand, bend down, everything hurt from waist down. I decided to try to go to church and had felt like I was going to collapse 5 times within an hour. I knew something was definitely wrong.

On July 6th, I called my PCP and told him my problems, I demanded to get an MRI. I am sure glad I got one, the MRI findings were Large Tarlov Cyst measuring 5.3cm x 1.5cm x 4.0cm on the S1 - S3, with bone erosion. Also, disc degeneration on L5. I saw a neurosurgeon the next week, whom said that "Although the cyst is quite big, and it should probably come out, it is NOT causing your pain. He said no Neurosurgeon would touch a cyst like that" He couldn't tell me what was causing my pain, but believed it was ligament pain and ordered an injection, which I declined. I was/am convinced it is this cyst.

I started researching everything I could find out on-line and saw that some of the people that have this pain and went to neurosurgeons were told the same thing. I'm in constant pain in the lower back, I cannot bend down to pick things up, even Lauren. I have shooting pains in my legs on occassion, as well as, headaches, pinching feeling in my buttocks, pain in my hips. I have lower back pain when I cough or sneeze. My feet tingle sometimes and I have weird random shooting pains. I am taking vicodin for the pain. This cyst is growing either out of a nerve or with nerves running through it and as it is large, it is pressing on other nerves. This cyst is filled with cerebral spinal fluid, which runs from the brain down the dural tube.

After doing much research, I came across a Dr. Frank Feigenbaum out of Kansas City, MO, he is one of the few doctors in the U.S. that treat these cysts. The outcomes aren't 100%, but I have talked to people that are back to 85% after 10 months. This has given me hope. I have had people on several forums voice their opinion either pro-surgery or anti-surgery, it is so confusing. I have talked to a friend of mine, Shawn, who has helped me tremendously get in touch with people from NORD (National Organization of Rare Disorders), the President of the Tarlov Cyst Disease Foundation and also get opinions from trusted neurosurgeons/individuals in his organization. Thank You, Shawn, you are a blessing! I have sent my MRI films to Dr. F. and am waiting on him to call me for consultation. There is another neurosurgeon out of John's Hopkins by the name of Dr. Long, that I am going to send my films to. I decided not to pursue seeking opinions from other neurosurgeons, because of the rareity of this disease, they do not know much about them. The one at Barnes said that he has "heard of them, they interest him and would like to see my films." This didn't give me the hope that Dr. F., who has done well over 100 of these tarlov cysts surgeries, does.

I have learned a lot in the last few weeks, I have good days and bad days, if I try to do anything "normal", I pay for it, so I mainly lay around, sit until I can't, stand until I can't. These cysts are just starting to be researched, according to the foundation, they received their first grant this past January. 4-5% of the population have these cysts, but only 1% out of those are symptomatic. I was told by the foundation president that there are 3000 tc patients (I don't know if that is in the US or worldwide). My last few days have been good, I get to the afternoon and am exhausted. I don't get to do too much with the girls, but I think they are starting to understand. When I have my bad days, flare-ups, I can barely walk or do anything without being in extreme pain. I think bending, picking up things, aggravates my cyst and causes the flare-ups.

If you wish to learn more, a good website is http://www.tarlovcystfoundation.org/

So now I am waiting on doctors....I will update as I get more information/news.

Thank you for all the calls/emails/well-wishes/cards/dinners. I think this is going to be a long road ahead of me and pray that all the decisions I make are the correct ones.