Inoperable avm

Hi, my husband was diagnosed with an avm around his intestines. All the avm’s I have heard about are in the brain. Do you think he was misdiagnosed?

Cathy- Yes, Brain AVM’s are the most common (of an uncommon condition!) but AVM’s occur practically everywhere in your body. Mine happens to be on my face/jaw/lip area, and we have members with lung, leg, hand, etc. I’m pretty sure we have at least one other member that has it in the intestines. And I think I’ve read a blog from a lady that has one as well.
I would guess that it isn’t a misdiagnosis. I would def get a second opinion, but the thing with AVM’s is that they are relatively rare and many docs aren’t that familiar with them. So to get a misdiagnosis would seem unusual. I’m sure it has happened, but still it just feels unlikely.
Check out the Extremity Group- link is on the right of the main page, and also search under the member tab for key words like intestine. Another good resource you may look into is the Vascular birthmark foundation which has some great info on tons of conditions falling under the general term, and has experts for each different malformation that you can email to get info and advice.
Good luck!