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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?

Members: 21
Latest Activity: Apr 19

43 Cauteries last time

Discussion Forum

Thalidomide and GI AVMs

Started by Madere (dancermom) Jan 26, 2014. 0 Replies

Here are some links to resources about thalidomide and GI avms:http://clinicaltrials.gov/show/NCT00389935…Continue

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Comment by Alice (Allie) Elaine Mastello on April 19, 2015 at 4:07pm

I sure hope the best for you, I understand all about the AVMs in the intestinal tract. The ileum, wow, they can just form anywhere.

Comment by Alice (Allie) Elaine Mastello on April 19, 2015 at 4:05pm

I don't know on the flying issue. I would think it would be fine.

Comment by WinningJane on April 19, 2015 at 3:35pm

Yes I did have the double balloon procedure and the bleed was cauterized. My AVM's are in my intestinal tract. This last one was in the ileum. Does anyone know if it's okay to fly when you have AVM's.

Comment by WinningJane on April 19, 2015 at 3:33pm

Comment by Alice (Allie) Elaine Mastello on April 17, 2015 at 2:36pm

Just read your profile. Did you have the double balloon procedure? This is a good supportive group to be in, yes, we are all survivors and continue to survive with on going issues. I will be going in next week for my monthly blood check and iron infusion. Doing good!

Comment by Alice (Allie) Elaine Mastello on April 17, 2015 at 2:33pm

Glad you found the group. I am anxious to hear more about your bleeds, did they cauterize and were they in the stomach or intestinal tract? Welcome!!!

Comment by WinningJane on April 17, 2015 at 1:24pm

I just found out about this group. I just got back after over 2 weeks in the hospital with an AVM bleed. I had 7 transfusions and had to be transferred from North Shore Hospital in NY to Lenox Hill Hospital in order to get the bleed fixed. This was my 5th bleed. I am so glad to find this group.

Comment by Bacu on February 22, 2015 at 3:39pm
Hi Dallas, Welcome to our group. Sorry that your Mom has to deal with this illness at this time in her life. Her condition sounds a lot like mine. I had a bad bleed 14 months ago. During a three month period I had eleven scopes, six of which were double ballon, and forty-two blood transfusions. All the scopes were done under general anesthesia. I am considered "elderly" by my original GI doctor. I was 69 when the procedures were done and I will remain 69 for the next 10 years! I don't remember them taking 3 hours except perhaps for the last two which were performed at one time to tattoo my small intestine to mark it for a resection. The only thing that I found uncomfortable about the scopes was the prep for them. My heavy bleed was in an area that they could not reach with the scopes so they had to remove that section of my small intestine. They removed it via laparoscopic surgery. Minor discomfort afterwards and could not tell that it was removed afterwards. Perhaps your mother's is reachable with a scope and the bleeding can be stopped. I don't think the doctors would put her under general anesthesia if she could not handle the procedure. Please go back through this groups messages and review other members experiences. I was put on a drug called Sandostatin Lar Depot for one year and have not had a bleed since. Side effects of the drug were minimal.
Good luck. We know it's hard making these decisions. Remember that any decision you make for your mother will be the right one because it's made out of love.
Comment by Dallas on February 21, 2015 at 2:17pm
Hello - I just joined today. My 90 year old mother, who is very mentally sound and generally well physically, was diagnosed in January 2015 with anemia and had several blood transfusions while in the hospital for a week. Her HB level was down to 4.7 before they realized this. After a colonoscopy and upper endoscopy looked good, she has received 2 iron infusions over the past 2 weeks and did the capsule camera procedure yesterday. A doctor called that evening and said they found a serious bleed (AVM?) in the small intestine and still have more film to review. I have done research and fear the next step will be the double balloon procedure. I heard these can take up to 3 hours under general anesthesia and that worries me considering her age. Has anyone here had this done under IV sedation? How did it work out for you ? Did it stop the bleeding or did it recur? I would be very interested to hear, especially from someone elderly? Thank you !
Comment by Alice (Allie) Elaine Mastello on February 19, 2015 at 12:04pm

Bacu, I can not believe it has been a year! You are doing great - which ever thing worked, or the combination there of! I am excited for you. That article is really good. I am going to look this Blair Lewis up and find out more. Thank you so much... Will get back to you soon.

 

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