Chiari Online Support Group

Growing Syrinx post 2012 Chiari 1 Decompression

Hi All! New to the group. I am a 47 year old married Mom of 1 (18 yr old). My decompression surgery was in 2012. My primary symptoms were exertional headaches and neck pain. Over the years, I continued to receive neurological care for my chronic headaches (more tension and migraine). My exertional headaches never completely resolved after the surgery. Fast forward to 2020. I started experiencing visual symptoms, increased headaches, bright spots in my vision after bending or a big stretch if I hold my breath a bit too long - all increasing over the past 12 months. The vision changes are hard to explain. Tunnel vision, shadowed vision, blurred double vision - very hard to explain to a Dr. The visual disturbances come and go but give me significant anxiety. I also experience a strange numbness in the occipital region of my head. Thank goodness for my neurologist who has been giving me Clonazepam for muscle tension in my neck for the last 8 years or that anxiety would just cripple me! Recent MRI showed a syrinx measuring 12mm x 5mm, which does not seem significantly large to me but I guess the determination for surgical intervention is based on symptoms and an understanding neurosurgeon. My neuro referred me to neurosurgeon again and after 2 calls from his nurses totalling 1 hour on the phone to ask me like a bazillion questions, they called me back. I have my appointment on 3/25. I happen to know that this specific surgeon only sees those he feels are surgical candidates so I imagine a procedure is in my future.

Curious to know if anyone has had similar symptoms after decompression or subsequent syrinx surgery years after decompression and your experience with/results after the procedure.

Thanks for taking the time to read this rather long post. Thankful there is a group of people who can relate to me and my condition!