Uncommon & Rare Presentations of the Chiari I Malformation by John Oro, MD

Uncommon & Rare Presentations of the Chiari I Malformation by John Oro, MD - Presented at the 32nd Annual Conference of the American Syringomyelia & Chiari Alliance Project, held virtually July 22-24, 2020.
American Syringomyelia and Chiari Alliance Project (ASAP) has held its annual conference throughout the country for the past 31 years. These conferences have brought together the world’s foremost authorities to present their research, experience and knowledge about Chiari, Syringomyelia and their related disorders. They have also been an exceptional opportunity for patients, families and caregivers to interact, network and support each other. We value the entire experience as one of ASAP’s many outreach opportunities.
asap.org/

[@jeanwinders9556]

Great Video! I was diagnosed at 33 after years of migraine severe low blood pressure and syncope. I always had massive head & neck pain, but I noticed a huge increase in symptoms after the birth of my daughter. 3 hours of pushing nearly did me in. I would love to know if any or patients had similar problems. Five years after the birth I could no longer stand the pain and was concerned about the syncope especially driving. The doctors at MGH operated one week after diagnosis and saved my life, forever grateful for those who are committed to finding answers for rare conditions.

[@travishanson166]

This is an excellent presentation. Covers essentialy everything I have been experiencing. Today I met with a new doctor and asked him to look at my recent MRi images, as soon as i saw the malformation, i just simply pointed at it and asked him what that was. He blurted out chiari malformation. He was the 7th doctor to look at the image. If chiari is confirmed and treated in my case, you may add oliguria to the list of rare symptoms. It has started with me recently, with exertion while being fully hydrated and unable to sweat, or not sweating to normal amounts for the temperature and work. Also on some really hot days I have not been bothered by the heat, no thirst, no discomfort etc. 100 degrees felt like 70 or feeling cold at 80. Always co-committant with exertion sufficient to increase blood pressure or flow requirements under normal metabolic conditions.

[@JayInt]

Thank you so much for this video. As a parent of a child with chiari this really helps to make sense of some aspects of our experience. My daughter used to have the respiratory fits you mention, particularly in the few months immediately after decompression. Her neurosurgeon dismissed the episodes immediately as "hysteria" which was infuriating. Fortunately those episodes eventually stopped.

[@koyaanisqatsi5163]

Thank you for your time and effort, great presentation - how I wish the neurologists I've seen knew at least some of this information - I've been told my 5 mm tonsils herniation is not the cause of all my symptoms - basically all the ones you've included. Please continue educating all of us patients and providers.

[@pixiemermaid]

Thankyou for this video. It is so nice to finally have understanding of my symptoms I have been experiencing my whole life but never understood until mri revealed I have this, so I am now researching my condition. This is excellent video of information. Thankyou.

[@kimg7421]

Would enjoy some input, trying to get info. Between chiari and ongoing breathing issues chiari surgery 2012 and in 2018 after a splenectomy ended up on 24\7 oxygen now hearing could be steming from chiari this whole time?? Would love to pick your brain.

[@shecat1964]

What about sudden weight gain?