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Apr 28-May 04

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Hey Friends! 
I have not updated for a very long time. Most of my updates have been on Facebook. I came to Caring Bridge to follow a friend from High School, and decided it might be a good time to update. Recently, I have been to a couple of events where I have encountered people that I have not seen for a while. Many commented that it was “nice to see me up and around” and that I “must be doing better.” I hate to be a Debbie downer, but the fact is, things have not been good. The issues I am dealing with are the same issues I was dealing with in my last update, 10 months ago, they are just worse. Many of you may remember that the reason for my initial visit to Dr. Polly was to fix my left SI Joint. I had right and left side fusion and the left side did not fuse. The result of that is that it is very painful and unstable. When I went to see Dr.  Polly, he determined that I have Flatback Syndrome, and that is is the reason why no surgery on my back or SI joints has ever worked. So, instead of just revising the SI Joint fusion, he ordered a surgery called a Pedicle Subtraction Osteotomy. The purpose of this surgery was to realign my spine and create the necessary curvature in my spine. We knew that it was a very difficult surgery, very long and I would likely have a lot of blood loss. What we did not expect was the very unfortunate complication that occurred; he put his instrumentation through my Vina Cava vein. Without getting into too much detail, this created a life or death situation. Because they had to go back in with a stent and stop the bleeding, he was not able to do anything with my left SI. In addition, I woke up after both surgeries with a great deal of numbness and pain in my right foot and leg. This is in addition to the chronic nerve damage I have from the previous right side SI surgery. In order to determine what was going on, I have had an MRI, a diagnostic injection, a mylogram and an EMG. The results of these tests show that there is close to a 100% obstruction of the S1 nerve root. Normally, such an obstruction would warrant a surgical solution. But, in my situation, there is so much hardware in the way, they are not able to see where the obstruction is. Dr Polly feels strongly that going in without a clear vision is a bad idea. I was very upset to hear this news. My foot is about 75% numb, and so very painful. It is very unsteady, if I step on it wrong, I can fall. I can walk on it, as many of you have seen, but after walking on it, it is very, very painful, and takes several days to recover. Instead of surgery, Dr. Polly has proposed two things; a series of injections, and the placement of a new technology spinal cord stimulator. In the past, I had horrific experiences with stimulators and was horrified at the prospect. Dr Polly explained that what he is proposing is new technology. He has asked my Pain Specialist Dr Hess to look into this new technology and look into this as an option for me. I see Dr. Hess on 9/24, and will have more information then. Once we get that figured out, we will deal with my left side, which will mean another surgery. I know this is really long, so thanks for reading it. It is all very complicated and frustrating. I have spent this year since surgery dealing with everything that transpired, feeling grateful that I am still here to do so, and trying to deal with the repercussions of all of it. I so appreciate any good thoughts and prayers that are sent my way, that is for sure!! Thank you for all of the wonderful love and support! 

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