Brian bled from the mouth yesterday...he wasn't doing anything of real significance - just showering! He tasted that familiar taste and spit blood out. Fortunately they only last a minute or so and disappears...Funny how things come together now since we've been reading in here (thank you all for sharing your stories). Last year he bled often (usually came in spurts of frequency)-which we discarded as gingivitis...how stupid of us to assume that especially since we couldn't locate any specific area of gums the bleed would come from...his Dr. has been on vacation and will be contacting him tomorrow for discussion of his angio results/plan of attack...his pics from the angio looked like a party happening on his face...I also noticed a "new" red blotch on his right side of face which angio confirmed as additional spreads..we also found out that it has started spreading to his left side (which is unnoticed to the eye). He's 41...why the rapid growth at this point in his life?
Hi, Sue, I'm sorry I didn't respond earlier. I'm really sorry to hear about the spreading of the AVM. Sometimes there is an obvious cause for AVMs to start spreading (puberty, pregnancy, trauma), and sometimes there isn't. Facial AVMs can suddenly get aggressive even in adulthood.
You may wish to friend Kimi (http://www.avmsurvivors.org/profiles/profile/show?id=Kimi&). Her husband's story is similar to Brian's. This week he is undergoing at 20 hour resection at the Mayo Clinic in MN. I very much hope it goes well for him.
Not every doctor understands that when there is visible redness on the skin (erythema), that part of the skin is AVM-involved and will need to be removed if the AVM is resected to prevent recurrence. (The initial resection planned for my son would have left in place AVM-involved skin; thankfully, we found a more experienced surgeon.)
Hi Sue - Sounds like you are on the right path with your chosen Doctor. I am an AVM survivor of the tongue, and I had AVM growth at different points in my life. Most recently, my late 30's to early 40's (prior to my surgery, which was 2 years ago). Certainly for women there is hormonal correlation, and I would think at the age of 41, this may also hold true for men. I agree with Dancer Mom in that sometimes having not done any kind of surgery in the past is sometimes better. Please let us know what happens after you see his doctor and glad you are becoming your partner's best health care advocate. We all need one and your partner is one lucky individual:-)
Thank you Debra....will keep you posted once we know what the game plan will be...I'm anxious to see how long before they start with the procedures...
Hi Dancermon....thanks for the lead...I read her story and find it very similar as well...I do hope that he is doing well as I dont see any updates. You obviously did your homework and obtained the right Dr's for your son (he looks great btw). I am so anxious to see what they say from the angiogram on Tues....his lip is also drooped and almost has a bluish look to it.....exactly how many embo's did your son have??