Small intestine AVM

Posted by irene2 @irene2, Nov 20, 2022

Hi, I have been diagnosed with a small AVM in my small intestine after Hgb was low after doing bloodwork for my well care visit. I was sent to the ER and given a blood transfusion. Apparently it is a slow bleed and was eventually discovered via pill-cam. I was prescribed iron supplements and my Hgb is “normalized” which I’m told means the bleeding has stopped. (Im now off the iron supplements as they worked rather quickly and they were concerned about iron overload). I’m scheduled for a DBE to ablate it but wondering if I need the procedure since the bleeding has stopped? Also, will it even been visible since the oozing has stopped? Can it be managed with a program of iron supplements? Since I need hip surgery, could the “trauma” of the hip surgery cause the AVM to start oozing again? and (I’m concerned about undergoing general anesthesia 2xs within a couple of months). I guess I’m concerned the DBE isn’t necessary or it won’t be successful. So glad I discovered this site and grateful for any guidance.

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Sue, Volunteer Mentor | @sueinmn | Nov 20, 2022

@irene2 AVMs (Arterio-Venous Malformations) are permanent - it is a spot where the artery & vein cross over or are near each other, and the walls have merged:
https://www.mayoclinic.org/diseases-conditions/arteriovenous-malformation/symptoms-causes/syc-20350544
While this article is about the cerebral AVM's it is a good explanation of the mechanics.

As you have experienced, they can occur in other organs, like the intestines, stomach & lungs.
I have never had one, but my friend has had them in several places over almost 50 years. She is treated at Mayo, and their protocol is "watch and wait" unless and AVM is changing size or has bled. Then ablation is done because the bleeding risk increases with changes or a previous bleed.

The low iron is not the cause of the AVM or the bleed, but rather a symptom. So treating it with iron is like putting on a bandaid, it does not cure the malformation, just the low Hgb. The DBE cures the problem.

Like you, I am not a fan of repeat general anesthesia in a short period of time, but I would not want the risk of a new bleed and having to have emergency surgery for it while recuperating from hip replacement.

What advice is the doctor giving you about timing of the 2 surgeries?
Sue

irene2 | @irene2 | Nov 20, 2022

Hi Sue, thanks for your reply. My gastro says he doesn’t think the 2 general anesthesia close together is an issue at all. He also says doing the hip before the DBE isn’t an issue and he says the hip surgeon will most probably put me on anticoagulants. I have a patient portal email into the doctor who will do the DBE (different from my Gastro) but am waiting on them to get back to me.