Hi 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 in remission. 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)