Whole of body AVM

Anybody in this group heard of this before or are dealing with this?

Brain AVM in right basal ganglia diagnosed at 5 years old.
Now at 15 seeing new AVM in right knee and left side over kidney. Though exceedingly rare Neurologist suspects whole of body AVM.

My son had a brain hemorrhage on right side occipital lobe, during cranioplasty they found a new avm on left side of brain, scheduled for angiogram 3/2 for increased cranial pressure and to check on these 2 AVMs

My husband doesn’t have a whole body AVM and don’t think I’ve ever heard of that. He does, however, have lots. inside his nose, base of brain, spine, toes, hands, small bowel, tongue. The list goes on.

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Some people definitely have multiple AVMs and HHT brings multiple AVMs with it.

Hello, My name is Lynn and I have had various AVMs, gastro and intestinal, fixed in the past year and a half. The last time I had 10-12 AVMs fixed in my small and large intestines, with double balloon endoscopy, in January 2022. They have done the endoscopy for gastro AVMs, at least 6 times, now. I was originally diagnosed from swallowing a small camera that went thru my gastro system. Before the camera test, I kept getting Anemic so badly, that I needed blood transfusions. That led to my Gastroenterologists diagnoses. And, for now, I am holding my own, for how long, nobody knows. My blood counts are constantly monitered and managed with iron infusions and procedures to stop additional bleeders. You mentioned your husband has AVMs in numerous parts of his body. Is that unusual, and should my Dr.s be checking me for other AVMs? How are AVMs in other parts of the body, diagnosed? I am also curious, does your husband ever experience pain, when he is having a bleed? It is extremely difficult to find other people to talk to about this subject, so I hope you don’t mind my curosity. Since my diagnosis, it is like my life is in a holding pattern, waiting for the other shoe to drop. How do you and your husband deal with the possibility of bleeding on your insides at any time? Thank you, in advance. :smiling_face:

@LynnM

Welcome to AVMsurvivors! (I don’t think I’ve welcomed you before!)

Everyone in this community is in a rare position but honestly everyone in this thread is in a rarer condition. In my experience of reading messages on here for the last 5+ years, I’ve not heard of many people with multiple AVMs, nor a “whole body” AVM, though sometimes these things are because new terms are coined.

It is definitely unusual to have multiple AVMs but it seems to be very rare to detect gastrointestinal AVMs because I don’t think you get the pain associated with other types of AVMs and so the main indication is the anaemia.

The main cause I’ve seen in this community of multiple AVMs seems to be HHT, which is a wide-ranging condition that can bring multiple AVMs as well as haemorrhagic telangiectasie – issues with bleeding from the skin or mucous membranes. We do have a contingent of HHT members, a couple of whom are really rather poorly. HHT is an inherited condition which can be tested genetically.

There may be other reasons for multiple or whole body AVMs: I’m just sharing my view of what I remember reading here.

Very best wishes,

Richard