Does anyone have parents or kids that also have Chiari? Just listened to the below podcast which highlights several families all having it. Now I'm concerned my kids might have it - but currently show no symptoms. But mine didn't appear til later in life.
https://podcasts.apple.com/us/podcast/advances-in-care/id1671647417?i=1000764657375
I'm 38 years old and have Chiari Malformation Type 1.5, measuring 13mm, moderate CSF blockage. Symptoms include daily neck pain and significant tension, occasional intense headaches, regular moderate headaches, and general feeling of "off". Starting to notice some mild swallowing difficulty.
Two top neurosurgeons of Penn and John's Hopkins both recommend decompression surgery. The one I'm leaning towards said they would remove some skull bone, neck bone, shrink Chiari with cauterization, cover Chiari with a patch and a plastic plate with titanium screws to prevent re-compression and scar tissue build up, and stitch the muscles to prevent CSF leak.
Who has had a similar surgery? What was your recovery like? I was told the surgery recovery is painful and intense. I'm a mom of two young kids and seeking firsthand experience to better prepare. Also, are you happy you had the surgery?
Thank you if you've made it this far :)