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Gastrointestinal AVMs

I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have them rebleed. I get three weeks of iron infusions every three months or sooner right now. Are there others out there like me?

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Latest Activity: on Thursday

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Comment by Alice (Allie) Elaine Mastello on Thursday

wandawoman10, how very encouraging your message is for us as we continue our struggles. At times things seem overwhelming, but we keep going. To hear your story, for me personally, is definitely encourage. I hope Jason keeps improving every day. Life is so worth living and so worth the fight. We all support each other, what a difference that makes!


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Comment by dancermom on Thursday

Sorry, Danibee, we have a strict no-politics policy here, so I needed to edit on you, but private message and private chat are unmoderated, so you are welcome to share there with anyone who is interested.


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Comment by dancermom on Thursday

I had no idea Dr. Suen was involved with GI vms, wanda, but it doesn't surprise me, as I consider him a kind of superhero. I am glad Jason is doing well -- his doc is the best!

Comment by wandawoman10 on Thursday

I just wanted to share the adventure we are currently on with my son. Jason has several venous malformations throughout his body. We have known about those in his back area for about 10 years now. He has been receiving treatment on them for about 2 years. During his last scheduled treatment in July, it was found that he had extremely low hemoglobin count. After various tests it was discovered that he had the VM's in his colon and they were bleeding. He had about 4 inches of his colon removed on Friday. Dr. Suen at UAMS said that in all his years of treating and operating on VM's he had never seen one quite like this. The malformation was located where the small intestine meets the large, or the ascending colon (cecum). The appendix was four times its normal size due to blood leaking from the intestine down into it. On the outside of the colon, were spider like capillaries that had surrounded the area and was feeding the malformation. His blood was being directed to this area and this was one of the reasons his blood count was so low. The surgery went very well (Dr. Laryea and Dr. Suen both attending) and his recovery is going well, although we are still waiting for his colon area to "wake up". I write all this to let everyone know how important it is to be informed and to be tested and prepared for the possibility of this. My son will have to be tested on a regular basis to make sure the malformation does not reappear. It is vital to have regular checkups and monitor the malformations. Early treatment is crucial. Jason is a month out of surgery and he is doing exceptionally well. His blood levels are rising. Once he recovers fully from the surgery we then go back to treatments on the Venous Malformation in his back/chest area. Good luck to all. There are things that can be done!

Comment by Bacu on Thursday
Danibee, I don't know that the DB is rare. It is probably a matter of expensive equipment and training. Congratulations on your initiative.
Comment by Alice (Allie) Elaine Mastello on Thursday
Bacu good to hear from you, hope you continue to do well
Comment by Alice (Allie) Elaine Mastello on Thursday
Wow, congrats! That is HUGH! So glad you have made that kind of progress, I fully support what you are doing. Also, when is your procedure scheduled for? Anxious to hear!
Comment by Danibee on Thursday
Thanks for the info Bacu. There is a great hospital here in Orlando. Dr. Hassan will be doing it. I don't know much about the double balloon. Is it very rare?

Comment by Alice (Allie) Elaine Mastello on Thursday
Could your legislative action be to help us with AVM research?
Comment by Alice (Allie) Elaine Mastello on Thursday
I can't have the double balloon because of gastric adhesions. Too dangerous! Has anyone had that problem?
 

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