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@nancy82415

@kritter19 I was referred to Mayo (MN) by my orthopedic hand specialist. Was diagnosed and had successful surgery at Mayo. I go back annually for checkups and get a full head/spine MRI every two years. I was diagnosed with both Chiari Malformation and Syringomyelia. It will be 10 years this August when I first walked into Mayo.

If you have any questions please feel free to ask me.

Exciting news for me. A few days ago I was speaking with a co-worker from another dept where I work. Main conversation was work related, but some how we first started out asking how each other was doing. Long story short we discovered we both had brain decompression surgery for Chiari. They are celebrating 20 yrs and I am celebrating 10. This is the first time I ever encountered someone on a personal level that knows exactly what I am dealing with as they have gone thru it. I have very supportive family and friends, but to have someone who is working at the same place I am to talk to is huge. We laughed as they are newer to the company and I have been with there a long time, so they will ask me for the work questions and I will ask them Chiari questions. I have work experience and they have Chiari experience. So it is a win win!

Best wishes in navigating your journey to get answers. It will be a journey and it will be challenging at times, but don’t give up in finding answers. I will admit that my journey was long and tears were shed along the way to get to Mayo. But now I can look back and see my journey had to play out like it did to get me to where I needed to be with the most amazing doctors and staff at Mayo.

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Replies to "@kritter19 I was referred to Mayo (MN) by my orthopedic hand specialist. Was diagnosed and had..."

Thanks so much fir that....seriously! I do feel alone in this even tho i have the most amazing husband ever. No one can understand unless u r dealing with it u know....i have so many questions so let me condense to shorter list:)
I'm at the stage of trying to figure out what kind of syrinx it is. I just compared my older mri to most current and it went from t7-t8 now it's t5-t9

Pain management doc wants to do another complete cervical radio frequency ablation bilateral this coming Wednesday.....i did this with a different doc almost 2 years ago with no relief ...New doc says to trust him, that he doesn't think the last doc went in in the correct area????