Hello all. I was diagnosed with Chiari last March and had my decompression surgery in June. I had a lot of weird symptoms for years but they were always managable and not too alarming. Last March, I was training for my first Tough Mudder. Part of my training was lifting heavy and increasing the weight every few weeks. On a day that I increased the weight on the pull down, I was straining tremendously on my first rep and immediately got a sharp, stabbing pain on the top, left side of my head, became dizzy, nauseous, and my pupils started dilating/contracting rapidly. I guess that was the straw that broke the camel's back. I ended up in the ER and started the long process of doctor appointments and more scans than I can remember. My Chiari symptoms became full-blown. I went from being an active, healthy marathoner, weight lifter, artist, and super-mom to spending most of my time in my bed. This last year has been the most difficult time in my life.
After the surgery, I initially felt better while I was still on narcotics but as soon as I weaned off, I realized all my symptoms were still here. Now over 8 months later, things still have not improved and are showing no signs of doing so.By a surgical standpoint, my decompression should have been successful. I've been accepted as a patient to The Chiari Institute and am going to see if they can offer any help for me. I can't imagine they have anything that would help other than another surgery and I am very ambivalent about that.
I am doing my best to keep positive and find new activites and hobbies that I am capable of. I'm also trying to adjust to this new path set before me. I do what I can, when I can but am still trying to figure out what to do with this new person I'm left with.
I am grateful to have found a place with people who understand this condition and look forward to getting to know you.