I've Been Diagnosed with Chiari, Now What?: A Patient's Perspective
HTML-код
- Опубликовано: 31 авг 2023
- This educational lecture garners the pediatric patient and caregiver's perspective on their personal journey from first sign of symptoms through treatment, to today (July 18, 2023). Dr. Jeffrey Greenfield and Amanda Cruz of Weill Cornell Medicine interview two patients and their mothers on their experience with Chiari malformation.
These families have very different and personal experiences that explore choosing local versus traveling for treatment, their journeys to diagnosis, how they felt along the way, how they feel now, and advice for other Chiari families.
The views expressed in this video are those of the patients and families involved. Bobby Jones CSF does not advocate one medical institution or provider over another. (2023)
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. ❤
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
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?
Thank you for posting ❤
Thank you so much for this. I appreciate the conversation focusing on life after surgery.
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?
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.
Did both children have EDS?
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.