I posted this on the Pvns is Pants site and felt that it was important enough to repost it hear.
Our struggle is obvious at the time of surgery but it is quickly forgotten or there may be expectations for you to be 100% again...which will never be the case. We will become healthier, stronger and more determined to stay mobile.
People please don't stop working out when physical therapy ends. Let it be a spring board into maintaining or regaining full body health. As I study about pvns I am reminded that it is a a very aggressive tumor that interacts with the state of health of each individual. To make this short. ..cancer patients don't just have their tumors cut out and then forget about having cancer. The ones that do much better than the masses have focused on making their bodies as strong as possible. They do this to not only help prevent a recurrence but to have a stronger ability to recover if it does return.
In 2000 I was in a horse accident resulting in severe spinal cord compression in the neck and quadriparesis. I was told that I needed to accept being in that chair for the rest of my life. I wouldn't accept their opinion and told the docs that I would climb/hike mountains again. I was laughed at. It was a very long road to recovery but I did climb walls and hike the mountains again. Then in 2008 struck with what looked like Guillian Barre Syndrome but in fact was severe bilateral distal end poly neuropathy. Yep you guessed it, nearly lost all movement of legs again. Then Last year I was diagnosed with pvns. This is not a woe is me story for I am the luckiest person in the world.
The point is that statistics don't account for a fighting spirit and we can tip the scale in our favor by taking control of our health. If I hadn't maintained and rebuilt my bodies health each time, I would still be in the chair. Surgeons can only do so much to treat pvns and the rest is up to us. Don't accept your limitations find a way around them. Lets not forget that our families are also effected by pvns and remember to thank your supporters.
In 2000 I was in a horse accident resulting in severe spinal cord compression in the neck and quadriparesis. I was told that I needed to accept being in that chair for the rest of my life. I wouldn't accept their opinion and told the docs that I would climb/hike mountains again. I was laughed at. It was a very long road to recovery but I did climb walls and hike the mountains again. Then in 2008 struck with what looked like Guillian Barre Syndrome but in fact was severe bilateral distal end poly neuropathy. Yep you guessed it, nearly lost all movement of legs again. Then Last year I was diagnosed with pvns. This is not a woe is me story for I am the luckiest person in the world.
The point is that statistics don't account for a fighting spirit and we can tip the scale in our favor by taking control of our health. If I hadn't maintained and rebuilt my bodies health each time, I would still be in the chair. Surgeons can only do so much to treat pvns and the rest is up to us. Don't accept your limitations find a way around them. Lets not forget that our families are also effected by pvns and remember to thank your supporters.
I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional to determine your individual risk factors.
I was recently diagnosed with PVNS diffuse right knee. I have so many questions because the diagnosis came out if the blue. I am seeing dr. John Healey at Sloan Kettering. Would love to talk to someone who can help me understand what best treatments are snd also how to stay fit and healthy pre-op.
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