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AVM Survivors Network

Help! does anyone have facial avm and trigeminal neuralgia


#1

Madison had a facial embolization two weeks ago… When she woke up she felt amazing an hour later she had a major pain episode or attack grabbing her face in the most pain I’ve ever Seen her in…she was then admitted to children’s Hospital in Boston…the next morning her interventional radiologist came to seduce her and told me this was not typical avm pain or behavior and he felt she now had a secondary condition called trigeminal neuralgia which is major pain of the 3 main nerves in your face… He felt the avm could have triggered it… He had a neurosurgeon come in and he confirmed the diagnosis… I put my baby in an operating room two weeks ago and now she’s in worse pain than ever that we can’t get under control…anyone else??


#2

I am so sorry that this happened to Madison. At some point in my AVM journey I did start to research trigeminal neuralgia because I realized the some of the embolized vessels were in that area and could certainly constrict the trigeminal nerve.

Do you know which vessels were embolized? What were they embolized with? Is it possible that they are now constricting the nerve in some way? Have the doctors told you why this is happening? Have they ordered any post embo scans to look at the area. (I have no idea which would be the appropriate ones.)Does Madison have control of her muscles that receive signals from the trigeminal nerve? Keep asking questions. It sounds like your daughter's doctors are concerned. I am sure that they are doing everything in their power to figure this out.

Please let us know what you find out. Wish I could help.