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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Helston, UK

I have suffered with this that I know of sinc 2007 but the symptoms all my life having been born with it, Has anyone heard of this it is at times very debilitating and some symptoms I suffer are Migraines,chronic pain in the base of the head top of the spine, down side of neck and across the shoulders caused by a hole in the base of your skull and the brain pressing on the top of the spine, which along with the Osteo/Rhumatoid Arthritise impedes my walking. It has got worse as I have got older… read more

March 28, 2016
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Answer Summary

Members shared their experiences with Chiari Malformation, a condition where the brain presses on the top of the spine through a hole in the... Read more

Members shared their experiences with Chiari Malformation, a condition where the brain presses on the top of the spine through a hole in the skull base, causing severe headaches, neck and shoulder pain, and balance issues. Several members described personal connections to the condition, including one whose 14-year-old daughter had successful decompression surgery after a 14mm herniation, another who found relief from severe migraines through Topamax medication, and others who mentioned family members diagnosed with it. A recurring theme was the complex overlap of Chiari with other conditions like fibromyalgia and degenerative disc disease, with members expressing gratitude for medical advances that have dramatically shortened recovery times compared to decades past.

A MyFibroTeam Member

I've not heard of it before. But everything you've spoken of i've experience those same symptoms since back in 2012. We don't have alot of good rheumologists in south Florida. So i'm thinking of going to northern Florida where there are alot more rheumologists to get to the bottom of things. I don't like taking pills. Because of all the side effects.

March 28, 2016
A MyFibroTeam Member

Hi, I used to have severe migraines and I had a MRI. In 2003 and it said I have a minimal Chiari 1 malformation . The Dr. put me on Topamax twice a day and I hardly ever have a headache anymore.

March 28, 2016
A MyFibroTeam Member

Boy we get some interesting things on here. It makes interesting reading. I have never heard of it and i think the fibro is bad enough let alone that as well. Sending love and healing for you. Cheers Sharon

March 28, 2016
A MyFibroTeam Member

It's spelled Chiari Malformation (Key-r-ee Mal-formation). My daughter has type 1.

March 28, 2016
A MyFibroTeam Member

No.. never heard of it but then I see a lot of things on this site I've never heard of before. It's like learning a foreign language.

March 28, 2016

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