My husand was recently diagnosed with an AVM of his C5 vertebrae. His symptoms began with shoulder pain and numbness and tingling in his right arm. After months of thinking it was cancer, we received a diagnosis. Now we are searching for information and support. He has had multiple MRIs, CTs and angiograms to reach this point. He completed a course of radiation a few weeks ago and is now working with a pain medicine doctor. They are treating him as a spinal AVM patient since they can’t find anything on his AVM location. Has anyone heard of this before?
Deb,
Welcome to avmsurvivors! For the moment, I’ve moved your query to the Spinal section because I think the greatest chance of someone with a similar condition will be among such people. Since an AVM is an arteriovenous thing, I’m somewhat surprised at anything inside the bone but we are all patients here, not doctors.
Hoping we might find you someone with similar experience.
Very best wishes,
Richard
Richard
Thank you for the message. I appreciate your guidance in getting the post where it makes more sense. We are aware how rare my husband’s condition happens to be. His care team is growing and they have been consulting with other doctors. If it hadn’t been for a radiologist who insisted there was a vascular nature, they would have stuck a needle in the AVM months ago.
His doctors will be presenting his case at conferences, and may publish in the future. We are hopeful to find anyone else experiencing this very rare thing amongst a community of people who are already experiencing a rare condition.
Thank you
Deb
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