I've Been Diagnosed with Chiari, Now What?: A Patient's Perspective

[@hawaiibound62]

Too many doctors still have no clue about this condition. And many neurosurgeons arent knowledgeable to check the flow of CSF and blockage. This medical diagnosis still has a long way to go for understanding within a vast medical community. ❤

[@shree-]

I had severe headache while laughing ,coughing .many doc said it’s stress headache. Atlast I got diagnosed with chiari malformation type 1.I did foramen magnum decompression and duraplasty surgery done on last month .now I feel better than before

[@Danielchall25]

How is life a year later? I was just diagnosed and awaiting surgery.

[@BrokenSurvival]

I was medically retired out of the navy last year with lots of symptoms and no knowledge of any of this. They found a cyrinix from an MRI while trying to diagnose the problems, they made it out to me like it was in no way a problem. Syringomyelia was never mentioned or talked about. Had an MRI last week and was diagnosed with Syringomyelia. Should this have been an obvious discussion after they found the cyrinix over a year ago?

[@blackbearhomestead]

Thank you for posting ❤

[@emilykuykendall2899]

Thank you so much for this. I appreciate the conversation focusing on life after surgery.

[@NENANY24]

Very informative video about aftercare awareness with “chiari” but in my opinion seems to be a awareness for “Mr. Chiari”. 😒 I am however always happy to see education about Chiari. Happy some of that addresses that and not just two personal experiences with a certain hospital/doctor.

[@ajsdream]

2002 I have many tests and finally an MRI. 3 Doctors my MD, a neurologist and a neurosurgeon. Now living in a whole new area. They did a MRI and said I do not have it???? Is that possible? I continue with symptoms. Muscles, headaches, neck pain is horrible. 5cm Balance, I can’t walk a straight line for nothing. And fall easily. Help! New mri is coming up, how can I ask my doctor to look for Chiari? Can it just disappear?

[@NBAk-xn5qb]

I had a brain decompression at Duke Med. 18 years ago. Not for Chiari, Arachnoid Cyst at brain stem and syringes at T3-7. I am 62 now and having issues again.

[@blackbearhomestead]

Did both children have EDS?