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AVMs (atrial venous malformations) and aortic stenosis


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Initial post: May 3, 2012 10:29:27 PM PDT
cynthia says:
Has anyone out there been diagnosed w/ AVM (after episodic, serious rectal bleeding?) AVM supp. genetic, normally does not cause problem - can occur in brain also. Doc laimed corrected during colonoscopy/endoscopy - BUT recurred exactly 2 yrs. later-Now say they found (after echocardiogram ordered due to supposed severe heart murmur - why wasn't that dxed 2 yrs. earlier?) AORTIC STENOSIS & G.I. specialist insists THAT is causing the AVMs. Cardiolists (2) say that was old belief - that the 2 are not connected. This occured last Oct. Have not been back to any of them since did not have Pt B medicare (I will this July) & they all billed from $138 to $225 to walk in hosp. room uninvited "to discuss things" - for under 10 min. Cardio guy said I will need complete aorta replacement-poss. made out of pigskin or something. Said I could have had this since birth -prob. at least 10-12 yrs. (the AS) If so, why did no one find it 2 yrs. earlier? (in another hosp. ). At that time they told family I had less than 2 hrs. to live (Hgb 4.3 - had serious epid. of bleeding for 3 yrs that I "wished away"- told myself was caused by ulcer, etc. GI doc said I can have another serious bleeding event at any time- Don't know who to believe-no $ for tests-paying down bills monthly/ am scared to death. One article on Internet stated there WAS a connection betw. AVM/aortic stenosis. Cardio. doc said that if I "wasn't lying" abt. having no symptoms re heart problem, then prob. don't need to have aorta replaced for abt. 2 yrs - UNLESS I have symptoms of heart attack. But as I said, GI doc said to have it done STAT! Can anyone imagine how scared I am? Only 4 people in family know but not how poss. serious things are & not something I can bring up to them as it wld. only scare them. Besides, they can't help w/ anything. Am carrying this around every second - I try not to think abt. it - but every single time I go to use bathroom, I panic, thinking of what GI doc said abt. the bleed. recurring at any time . Does anyone out there know anything abt. this?? Any info would be so appreciated.Oh-cardio doc said poss. have the AS from birth as have low bld. press., low chol. no diab.,never overweight but smoker 50+ yrs. am female, 67- he claims smoking not the cause. Am just sooo scared, confused, tired, broke & alone. Still work - have no choice - but just no energy/will anymore after that news.

In reply to an earlier post on May 5, 2012 4:39:38 AM PDT
T. Valeo says:
Cynthia,
I had my aortic valve replaced with a pig valve 18 months ago, when I was 61, and it wasn't bad at all. I was up and about the next day, and out of the hospital in 3 days.
Instead of traditional open-heart surgery I had minimally-invasive surgery developed by Dr. Joseph Lamelas in Miami, who has been training dozens of other doctors to do the technique, so you might be able to find someone near you. Also, if you can wait, you might qualify for an even less invasive technique that involves running a catheter containing a new aortic valve from an incision in the groin to the heart. When the catheter is in the aortic opening the new valve is pushed out of the catheter and inflated. It crushes your own valve against the aortic ring, and starts working immediately. They don't even have to stop your heart, which is necessary with traditional aortic valve replacement. Most people leave the hospital the next day. The technique is considered experimental, and currently is reserved for people too old for traditional aortic valve replacement, but you might qualify.
Hope this helps. If you want more info sent me a note at wordgluttonbooks@aol.com.
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Discussion in:  Health forum
Participants:  2
Total posts:  2
Initial post:  May 3, 2012
Latest post:  May 5, 2012

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