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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: 8
Latest Activity: Apr 8

Discussion Forum

Thalidomide and GI AVMs

Started by dancermom Jan 26. 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 8, 2014 at 11:34am

You for sure have a lot to balance. Your strength is amazing! I fully understand! Lots of things you have to pay attention to. Sounds like you have a good "handle" on it, but I also know that is always subject to change, so you always have to pay full attention to what your body is telling you.

Comment by Alice (Allie) Elaine Mastello on April 8, 2014 at 11:28am

Comment by Comfortably Southern on April 8, 2014 at 2:23am

Hi Allie,
Wish I could offer something helpful, but I'm afraid my AVM knowledge is terribly limited. I don't think mine bleed furiously by any means, just enough to trip a positive for occult blood and get the docs all excited lol! I do have regular iron infusions (Venofer) for anemia and it keeps my H&H just into the acceptable range. I have more issues with Hep C and the various side effects, so I never know which condition is contributing to what problem! Not very helpful I'm afraid.

Comment by Bacu on April 4, 2014 at 5:40pm
No, Allie, no side effects yet. They rotate my right and left sides each month. I did feel like I had a bruise on my left hip after one injection a couple of months ago but nothing since. Thanks, I hope it keeps the bleeding at bay also. I like doing the spoiling not being the one being spoiled. Can take only so much of the pampering I received while I was ill.
Comment by Alice (Allie) Elaine Mastello on April 4, 2014 at 4:51pm

Bacu, so good to hear from you and get your updates. Are you having any side effects from those injections? I hope they keep the bleeding at bay.

Comment by Bacu on April 4, 2014 at 4:22pm
Marylee-Jane - I am not aware of any tests other than a Pillcam or colonoscopy for the large bowel. Perhaps some others know of more. I know you looked into Thalidomide and it is not available in Australia. Perhaps you would consider asking your doctor what he thinks about the drug I'm on, Sandostatin Lars Depot. Hope your feeling better soon.
Comment by Bacu on April 4, 2014 at 4:09pm
Allie & Dancermom - My husband and I have each had 2 dental implants over the past 10 years. They hurt our pocketbook more that they hurt our jaws! My husband had one just a few months ago and he had no swelling or pain. Good luck with yours!
Comment by Bacu on April 4, 2014 at 4:05pm
Just checking in today and saw that some of you are having a hard time of it right now. Allie, hope your feeling stronger and better. Will you be getting another iron infusion soon. I find it hard to believe that 6 weeks have passed since I last checked in with all of you. I think I may have put all that I went through out of my mind and focused on living normally again. I last posted on Feb 20 (the day I left the hospital in Birmingham). The next night the Doctor called to tell me that my hemoglobin level was at 12 and to just monitor it occasionally to see that it stays at this level. Two weeks later it had dropped to 11.8 but the difference could have been because different labs were used to analyze the blood. I have felt GREAT. I definitely have GI AVMs. Although there was some question about the section of the small bowel that was removed. The pathologists (3 checked it) report showed ischemia and lesions. Ischemia is the lack of blood flow to the area but my angiogram and cat scan showed no evidence of a reason why this would have happened. The surgeon did not agree with this report. He felt that I had AVMs and that the lesions that were found could have been caused by the surgery. Whatever, there were avms elsewhere so that's what we are all going with at this time. No sign of bleeding now - it will be interesting to see if the Sandostatin Lar Depot injections will keep the bleeding at bay. Perhaps it's working already and that's the reason I have no sign of bleeding. The GI doctor will evaluate my continuing on Sandostatin after one more injection. The surgeon told me that I would not miss the section of bowel that he removed - he was right. He was amazing, I felt a little discomfort after surgery but no pain, and everything is working really well. :)
Comment by marylee-jane on April 4, 2014 at 2:31am

Hiall can any one tell me what is the test for AVMS in the large bowel.My small bowel has stayed clear since the hemi colectomywith it...now they are in my large bowel well so my hemorrageing has told me as of last week??

Comment by Alice (Allie) Elaine Mastello on April 2, 2014 at 11:59am

THANKS! Feeling ok, just continually tired, you know what I mean. I am doing well, hanging in there!! :)

 

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Walking Again

Posted by John P. on March 18, 2014 at 8:00am 2 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

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