I was diagnosed at age 12, was told I'd 'grow out of it' and to date, have had 6 surgeries (with possible 7th looming). I've never given up on myself, on research for my condition or on the potential outcomes that have come from each new problem which might have cropped up along my journey. My hope is that with true stories, real feelings (both happy and sad) as well as an injection of humor here and there that I can help someone else going thru similar circumstances.
About Me
- JerseyOT
- In 2012, I had 2 operations back-to-back. It was an excruciating and grueling recovery. I was doing well until about 8wks post-op when I broke my back (T12 transverse process) in therapy. I spent another 10 days in the hospital and a month in an acute rehab facility. I was in a clamshell brace for over 8 months with no improvement. I underwent surgery #5 on 11/20/12 and required a 6th surgery on 11/24 due to serious complications. After spending another month in the hospital, I finally came home on 12/21/12. Recovery has been difficult and challenges seem to pop up whenever they get the chance. My most pronounced challenge are these terrible positional headaches that started in early 2013. I had a prior CSF leak in Nov 2012 however both the neurosurgeon and ortho surgeon believe it's occurring all over again as my brain MRI shows "clear & obvious indications of a CSF leak." I had at least 1/2 dozen consults with various specialists to determine what would be the best course of treatment and since bed rest hasn't worked, surgery is the only option left. Surgery #7 is full of unknowns regarding length of surgery, stay and recovery.
Tuesday, October 30, 2012
Surgery cancelled...due to "Sandy"
Hi everyone...a lot of you have been asking to find out if my surgery, which was scheduled for today, was still going to happen. The unfortunate answer to that is NO, it was cancelled mid-afternoon yesterday. I have no idea when the surgeon will be able to reschedule me but I am hopeful that we won't have to wait too too long. Stay tuned...I will keep you all posted as soon as I know anything. Thank you ALL of you for everything: your prayers, support, phone calls, emails etc.
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