Life with Arachnoiditis: Education, Research, Support & Hope
Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome &
Related Spinal Disorders
Copyright & Non Profit Organization status in process


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Cofounder - Karen Kovacik - Arachnoiditis Patient

Co-Founder Karen - April 2009 - Florida Keys FishingHi there! I'm Karen. Friends call me KK, Smiley, Curly, Dances with Deer and now Dances with Wahoo!  My claim to fame is my sense of humor even in the face of uncertainties. After all, isn't life uncertain? Isn't every day a gift? Isn't that why today is called the "present" ... because it is a "gift?"  I've been up, down, and I've been blessed beyond measure as I have touched the face of this illness many times escaping relatively unharmed.  I have hope and faith in knowing we will find answers for those suffering much worse than I have ever been.

Let me be brief with my history.  At age 12, I had a serious car accident in which I was thrown through the windshield and back into the car. Transfused with 32 (yes, 32) units of blood and suffered a cardiac arrest. In the 60's, people did not live through that level of trauma.  I was blessed. At age 21, I had my first spinal fusion: L4-L5-S1 and did great until a car accident in 1980. They found broken rods in 1981 and they fused L4-L5-S1 and removed instrumentation. That surgery was not successful, however, I thrived through 23 years running 5K's, jogging daily, swimming and being as active as possible until November 2003. Let me also add I had an undiagnosed neck fracture resulting in severe spinal stenosis at C5-C6 which was repaired in 2001, coming out of surgery with less pain than when I went into surgery. In November 2003, I developed CES (cauda equina syndrome) and had emergency surgery on a Saturday. Surgery lasted 6.5 hours when it was anticipated it would take 3 hours. They found a real mess. L3-L4-L5-S1 was cleaned up with my surgeon carefully removing scar tissue scattered throughout my spinal canal with bone fragments encapsulated inside. He then fused and inserted 2 state-of-the-art spacers plus instrumented with rods and screws from L3-S1. I recovered beautifully although I had to learn to walk unaided and learn to balance again which I did from the morning following surgery. In June 2006, I fell down a flight of stairs without realizing I was injured. By October 2006, I was experiencing another round of more serious CES.  In November 2006, I underwent a fusion revision adding L2 to L3-L4-L5-S1. Another spacer was added at L2-3. L2 to S1 was reinstrumented with new rods leaving screws intact from L3-S1 adding new screws at L2. It was during this time we believe a nick in the dura may have occurred causing arachnoiditis, and/or exacerbating, existing arachnoiditis. Let me give credit where it is due: my CES was twice successfully resolved by my highly skilled surgeon, George Frey, MD, Colorado Comprehensive Spine Institute.

Some months following the last surgery, there seemed to be no diagnosis found for new pain and neurological issues. I had a sense there was more to the situation and sought out another opinion on my own across the state at Durango Spine. Lance Hamlin, PA to Dr. Youssef, identified the arachnoiditis in under 2 minutes of MRI review and explained it to me. At that time, a spinal stimulator was mentioned as a possible option. Instead, I opted for physical therapy which helped immensely. Then I started researching in an effort to find answers. Since November 2008 I have been in experimental treatment which is proving to be highly successful for me. It is my firm belief my arachnoiditis is not progressing. It is anticipated that I will remain in treatment indefinitely. MRI follow up is planned to be able to quantitatively document my progress sometime around the three year mark.

Karen's Journey (continued on page 2)

Life with Arachnoiditis: Education, Research, Support & Hope
Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome & Related Spinal Disorders
Copyright & Non Profit Organization status in process
Temporary Mailing Address:  P O Box 1202, South Fork, CO 81154