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.
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. 
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
He doesn’t have HHT per se. He does have an unidentified genetic mutation but the mutation started with him.
Hi Lynn. Nice to meet you 
It’s my 15 year old son actually. When they go through puberty new AVMs can grow or new ones form, though it’s rare.
New AVMs have become visible. Now on both knees, over the kidney and in the white of one eye. He’s pretty much a top to bottom situation of AVMs which is why it is considered whole of body. It is very rare, as is everything with this child. What is not on the surface we don’t know. A whole body MRI won’t be done because they don’t want to tie up the machine for an entire day. Should he experience symptoms scans will be done on the applicable area.
His brain AVM has ruptured twice and that was life-threatening. He was seriously ill both times. One knee ruptured and he experienced some mild discomfort. The rest appear to be intact. His brain is scanned annually and will be for the rest of his life. For the rest probably the only area of main concern is if there is one in his heart.
That’s as much as I know but glad Dick was able to offer more insight.
I’ve got to admit that today I’m feeling really over this whole AVM business. It will be 10 years since diagnosis next month and it’s controlled every day of our lives ever since. Where we live, where we go, what we do, how we feel, who we are.
The brain AVM has us in chains and slaves to it’s will.
@Christine_O that’s not at all surprising. From what I can see, you’ve been in major overdrive to try to look after Jack as best as anyone possibly could, and to have kept that up for 10 years is miraculous. I’ve no idea what the right thing to do or say is but if you need to regroup somewhat, I think you should allow yourself to do so.
How to allow yourself to do that is the key.
and where to find the time for it