Hi All from sunny South Africa
Have any of you been diagnosed with the above? Docs here don’t seem to know much about it 
Ooh! I can honestly say I’ve never heard of those veins & arteries! However, on looking them up, I get the impression that you’d fit into our gastrointestinal group, if we had enough people to make up a group 
I can see that we have had one or two gastrointestinal members in the loooong past, so I hope some may still be around and see your post. I also wonder if any of our @PulmonaryHeartHHT members might have anything in common with you.
Welcome!
Very best wishes,
Richard
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I’ll have to start that group…I hope the past gastrointestinal members you referred to are still around…otherwise that’s a bad portent for me 
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Thank you for the response! I previously had the two pulmonary ones, and they are debating if my brain aneurysm is actually an AVM, but the one they are watching they actually called a gastrointestinal malformation. Not sure what all “gastrointestinal” involves! LOL!!! This is a HUGE learning curve 
Terri
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Thank you so much for your replyTerri.
Sorry to hear about the aneurysm and pulmonary AVM’s did they sort the pulmonary ones out?
Yep, the GI ones are rare and no one here seems to know a lot about them. Which arteries and veins in the GI are affected with you?
Kind regards
Shaun
At the risk of sounding like a broken record, if your doctors don’t know what to do with them, have them contact Mayo Clinic. I know we are a LONG plane flight away, but even if it’s just virtual discussions and advice, they would be good ones to talk to.
As to which office, I don’t know. The only one I have any experience with is the Rochester Minnesota office.
TJ
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Thank you TJ
I will definitely request that they do that, once they return my numerous calls…they seem to nervous to do anything 
Kind regards
Shaun
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The pulmonary ones I had lung surgery for and they removed the lobes that were affected. I just got back from Mayo a couple of weeks ago and the doctor there informed me they found a “gastrointestinal” one. I don’t have another Dr appointment with her until June 30th and I have a list of questions. One of the test notes they did said I had some kind of malformation in the artery to the left kidney. I don’t think the kidneys are gastrointestinal, so I have to ask about that. Hope you are doing well!!!
Terri
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Thank you for your reply Terri. Trust that your surgery went well.
As soon as I get any info on the GIT AVM’s I will definitely share with you.
Thank you!!!
Hello Shaun, I have had numerous scopes done to stop/repair AVM’s, located in and around my intestines. I have a wonderful/caring Gastro Doctor, named Dr. Paul Johnson. I credit him, for still being alive. I have done camera endoscopy, twice. He has repaired/stopped, various AVM’s, in my small bowel, at least 5-7 times, in the last couple of years, and he says that he can do this procedure, as many times as necessary, to stop the bleeds. I have had to get blood transfusions and iron infusions, because of blood loss. The Dr.s moniter my Hemoglobin, monthly, or sooner, if necessary. As soon as a major drop in my blood count, my Dr. does another EDG scope, to fix the bleeds. It is a constant battle, with, what seems, a never ending scenario. I am a 74 yr. old female, and I am so very grateful, to be among the living. Dr. Johnson explains that intestinal AVM’s are quite rare. It is like a vicious circle, that is never ending. My body and mind are getting more tired, with each cycle, however, I just keep trying to fight back, the best, I can. I am growing weary, but I still hope, for the best. Hope my experience, helps someone else.
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@Shaun1 I’ve added you to the GI group. Sorry it took me so long but you have at least a couple of friends here.