New here.
Hello, I am 13 days post op for decompression, duraplasty and C1 and C2 laminectomy. 8 years ago I was diagnoses with Lupus SLE - I had numb hands and feet, tingling, loss of balance, vertigo and chronic pain. My ANA test came back borderline so the Dr gave me a diagnosis of Lupus. This past January I was in Florida for a marathon and got caught in the tailing of a severe storm from a Hurricane and got affected by bounce back from a lightening strike. I got a headache. That headache kept going on and on and the pressure in my head was crazy bad. I felt like I had been hanging upside down on the monkey bars for too long and stood up too fast. i couldn’t think, swallow, and kept falling down. My Dr. ordered an MRI and it came back with 10mm Chiari. I went to one Neuro Surgeon who was horrible. He basically told me that eventually I would be crawling back to him on my hands and knees begging for surgery. I asked for a referral to a second opinion. The surgeon I met with was amazing. I can’t say enough about Univ. of WA and their team. Incredible place. By the time I had my full spinal MRI my Chiari was at 12mm, I had blocked CSF, syringomyelia and had 2 significan syrinx. I was a mess. I was in so much agony all the time. I had become a shell of myself. I am a marathoner and used to running 100+ miles per month and I had to stop running completely. My Neurosurgeon told me that I had this my entire life and it took this long to affect me. However, looking back at my childhood it was one filled of pressure headaches, balance issues and a few other things. I am sure it was the Chiari. No one ever really took me seriously growing up. They just thought I was goofy. Having this surgery was the best thing I could have done. I noticed relief immediately upon waking up. Recovery has been rough and pretty painful until about day 10. I am now feeling so much less surgery pain. All my “Lupus” symptoms are gone. My brain is still fuzzy and a bit foggy, but the pressure headache is gone and the 2 spots in my back that I so desperately wanted someone to break to relieve the pressure are gone. My hand and feet no longer fall asleep and don’t go numb or tingle. I am walking just a little bit more each day and starting to feel little slivers of energy. I am off all the pain meds and muscle relaxants. I can swallow again without feeling like I am choking. I even got to keep my hair. I a terrified it might all come back and am taking things very very slowly. My goal is to run marathons again in a year. I have my first post op appointment on Nov. 7.
