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Bruce Robertso1478n
New member here. Has anyone had experience with AVMs following valve replacement. What has been the treatment and prognosis? Thanks.
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Ross
Well-known member
Sending to heart talk for better responses.
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Bruce Robertso1478n
Hello, Ross Y. Thanks for your rsponse. I should have noted that these AVNs (arterio-venous malformations) are in my stomach and I am told they are related to the valve problem. Apparently they tend to recur and I have to be treated with transfusions and iron therapy as necessary and laser ablation via gastroscopy. My hemoglobin level has gotten as low as 5.0 grams where a level of 14 is normal. I would like to know if others have had this same problem and, if so, what has their treatment been. Thanks.
Ross
Well-known member
To be honest, I had to look up what they were. I've heard of alot of things but this wasn't one of them. When I did a search on it, I found a lot of things pertaining to the brain but not much else. Let's see if some of the more knowledgeable ones here can help you out.
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Bruce Robertso1478n
AVMs
Hi, Ross. Again thanks for your reply. I have found the material about this condition in the brain but little else and my docs are unable to explain to me how a problem in the heart can cause these in the GI tract. Like you, I hope someone on the list can come up with more information. Hey, man, you are really on the ball! Very fast response!!
Hi, Ross. Again thanks for your reply. I have found the material about this condition in the brain but little else and my docs are unable to explain to me how a problem in the heart can cause these in the GI tract. Like you, I hope someone on the list can come up with more information. Hey, man, you are really on the ball! Very fast response!!
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curse
AVM
AVM
Probably not much help, but I had an AVM in my brain removed twice. Let's just say "someone" forgot to get it all the first time. A metal clip is in my head now & other than seizures it caused all is well.
The first surgery was done after it bled. They're like a "time bomb." It had bled @ least 2 times before the bomb went off.
AVM
Probably not much help, but I had an AVM in my brain removed twice. Let's just say "someone" forgot to get it all the first time. A metal clip is in my head now & other than seizures it caused all is well.
The first surgery was done after it bled. They're like a "time bomb." It had bled @ least 2 times before the bomb went off.
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curse
AVM
AVM
I'm not a pro w/ this, but try-
emedicine.com/med/topic169.htm
Arteriovenous Fistulas: article by Mark D Morasch
AVM
I'm not a pro w/ this, but try-
emedicine.com/med/topic169.htm
Arteriovenous Fistulas: article by Mark D Morasch
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Bruce Robertso1478n
curse's reply re AVMs
curse's reply re AVMs
Hi, curse. Thank you for your response. That is a most interesting article and, although it does not answer my specific question I am pleased to have seen it. It seems one of the etiologies is Congestive Heart Failure. So the incompetent Mitral Valve leads to Congestive Failure and to stimulation of the AVM which is already genetically present. Could be, I suppose. Thanks again. You guys have been a big help.
curse's reply re AVMs
Hi, curse. Thank you for your response. That is a most interesting article and, although it does not answer my specific question I am pleased to have seen it. It seems one of the etiologies is Congestive Heart Failure. So the incompetent Mitral Valve leads to Congestive Failure and to stimulation of the AVM which is already genetically present. Could be, I suppose. Thanks again. You guys have been a big help.
hi bruce and curse!
bruce,
i'm sorry, but i can't help you much with this one.... i do remember, however, that when our cardiologist checked me, he felt my aorta under my ribs about 3 inches above my belly button (and commented on how he could easily feel it there since i was thin).... i couldn't believe it. i thought it would certainly be higher up.......
felt like my stomach area to me!
curse,
thanks for clarifying that avm is related to fistulas.
joey developed a fistula which was picked up on at about 6 months during his echo.
it showed a moderate to severe leak and really frightened us. after doing a TEE, they found that he has a trivial leak at the valve (they knew this after his surgery) and that, coupled with the fistula leaking in the opposite direction, seemed like a big leak. thank God that his recent echo showed that the fistula is unchanged and all is well.
when i found out about this fistula i tried researching it almost to no avail. his surgeon, dr. stelzer, spoke with me at length, explaining that it is not uncommon to have these following surgeries that require "cutting away at some tissue".
he also reassured me that very few articles have been written about them. they either progress, at which point they can be "cauterized" (if i'm not mistaken) through a cath , or they remain unchanged. sometimes they even go away on their own. they just need to be watched.
sorry to rattle on for this long.....
i hope you find out more about avm and a doc who is familiar with it.
wishing you all the best, sylvia
bruce,
i'm sorry, but i can't help you much with this one.... i do remember, however, that when our cardiologist checked me, he felt my aorta under my ribs about 3 inches above my belly button (and commented on how he could easily feel it there since i was thin).... i couldn't believe it. i thought it would certainly be higher up.......
felt like my stomach area to me!
curse,
thanks for clarifying that avm is related to fistulas.
joey developed a fistula which was picked up on at about 6 months during his echo.
it showed a moderate to severe leak and really frightened us. after doing a TEE, they found that he has a trivial leak at the valve (they knew this after his surgery) and that, coupled with the fistula leaking in the opposite direction, seemed like a big leak. thank God that his recent echo showed that the fistula is unchanged and all is well.
when i found out about this fistula i tried researching it almost to no avail. his surgeon, dr. stelzer, spoke with me at length, explaining that it is not uncommon to have these following surgeries that require "cutting away at some tissue".
he also reassured me that very few articles have been written about them. they either progress, at which point they can be "cauterized" (if i'm not mistaken) through a cath , or they remain unchanged. sometimes they even go away on their own. they just need to be watched.
sorry to rattle on for this long.....
i hope you find out more about avm and a doc who is familiar with it.
wishing you all the best, sylvia
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Bruce Robertso1478n
Hello, Sylvia
Hello, Sylvia
Thank you for your response. Oh, my wife's name is also Sylvia and she takes care of me as apparently you do of yours. No doubt somebody will someday come up with a definitive answer to these problems. Until then it is day by day and I do enjoy the good days that I have. Thank you again.
Hello, Sylvia
Thank you for your response. Oh, my wife's name is also Sylvia and she takes care of me as apparently you do of yours. No doubt somebody will someday come up with a definitive answer to these problems. Until then it is day by day and I do enjoy the good days that I have. Thank you again.
Arlyss
Well-known member
Online AVM Support Resource
Online AVM Support Resource
Hi,
I just wanted to share another support resource with you. There is an aneurysm and AVM support group online at
www.westga.edu/~wmaples/aneurysm.html
This URL will take you to the home page, where you will see the AVM section.
I hope you will find it helpful.
Best wishes,
Arlyss
Online AVM Support Resource
Hi,
I just wanted to share another support resource with you. There is an aneurysm and AVM support group online at
www.westga.edu/~wmaples/aneurysm.html
This URL will take you to the home page, where you will see the AVM section.
I hope you will find it helpful.
Best wishes,
Arlyss
LUVMyBirman
Well-known member
Hi,
Sorry you are having concerns. Could it be the Coumadin exasberating the condition without connection?
I do know if you have a GI concern..... Coumadin can cause bleeds.
Take care and keep us posted.
Sorry you are having concerns. Could it be the Coumadin exasberating the condition without connection?
I do know if you have a GI concern..... Coumadin can cause bleeds.
Take care and keep us posted.
Hi, Burce
I do not know if this specifically applies to the AV malformation you have in your stomach but, I did have a very good cardiologist tell me one time that people with genetically defective heart valves are more prone to vascular defects in the entire body. That is why we are more prone to things like migraine headaches and brain anuerysms. If he were still practicing here I could ask him about this but unfortunately he was born with some type of hip joint problem and retired about 3 years ago.
Lettitia
I do not know if this specifically applies to the AV malformation you have in your stomach but, I did have a very good cardiologist tell me one time that people with genetically defective heart valves are more prone to vascular defects in the entire body. That is why we are more prone to things like migraine headaches and brain anuerysms. If he were still practicing here I could ask him about this but unfortunately he was born with some type of hip joint problem and retired about 3 years ago.
Lettitia
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Bruce Robertso1478n
Hello, arlyss, Gina M and icwhitney, Thank you all for your helpful responses. Most interesting about genetic heart valve defects. I was told about age 19-20 that I had a 'functional murmur' but not to worry about it. So, it could be that I have a predisposition to these damn things. It would be interesting to know if this is a recessive gene that is passed along to one's progeny. Again, thank you all. This is a most interesting and helpful group.
I heard that functional murmur crap until I was thirty!!! The doc who told me about the genetic disposition to vascular defects was the one who figured out my real malfunction just by listening to my heart. It always pays to find out everything you can.
Lettitia
Lettitia
