Is there a way to stop AVM's from developing in the 1st place - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-28-2005, 09:15 PM
Sarah H
 
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Default Is there a way to stop AVM's from developing in the 1st place

I know this has probably been discussed before, but I was wondering if there is a way to stop the growth process; Is there a way to stop growth before it gets started? I ask that because it seems like we are always dealing with the symptom (growth) instead of the cause, if they could stop whatever continues to cause it to grow then the treatments would "work" and the AVM's, hemagiomas would go be gone.

My daughter tried something, several years ago, that was suppose to stop some enzyme that made it possible for AVM's to grow; they analyzed her urine to see if she her body was producing that enzyme (which she was-it was excreted in her urine) The treatment was a strong dose of antibiotics which happened to have the side effect of inhibiting the production of that enzyme; however she could not tolerate the side effects plus it took forever to get the test results back each time she would go into see the doctor. Has anybody ever heard of that? And have they "perfected" the treatment if they have? Or are there other treatments available?

Thanks for any help that you can offer. I'll look forward to hearing from you, Sarah
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  #2  
Old 01-07-2006, 12:58 AM
juliemn juliemn is offline
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Default Re: Is there a way to stop AVM's from developing in the 1st place

I did hear of a urine test that could help predict the tendency for vascular birthmarks.

Is this what you're talking about? I believe the trials were done at Boston Children's?

Urine Test May Help Monitor Disfiguring Birthmarks
Test Spots Aggresive Birthmarks


I don't believe there is a way to actually prevent AVM's....from everything I've read it's simply congenital.

Julie
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  #3  
Old 01-07-2006, 03:13 PM
Sarah H
 
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Default Re: Is there a way to stop AVM's from developing in the 1st place

Yes that is one of the things that I had heard of and that Nell was part of. The doctor who conducted the test had just come from Boston, Dr. Jennifer Marler, and was at the Children's Hospital in Cinncinnatti. Have you heard anything about the success rate of that study/treatment? Nell's "markers" were elevated in her urine tests, she tried taking the high doses of antibiotics that somehow had the side effect of eliminating those markers; however, she could not tolerate the side effects.

Is there anything else? I keep thinking if we could just stop her body from making the new malformed vessells then she wouldn't need anymore treatments. Also, Nell's hormones are all over the place although she is going to be 20 soon, things have not settled down hormonely. I keep hearing that hormone change is a big agitator of growth, yet I also heard that taking any type of hormone control is not advocated because of the possibility of blood clots, etc... So where does that put us.

Could there be an AVM in another part of her body causing this instability of hormones? Maybe either in her pelvis and/or on whatever glands it is that regulates hormones?

We were finally able to get the release sent so that her MRI's could be sent to Dr. Burrow's office for review. I hope/pray that she will be thorough in her review and will know of a treatment that will help eliminate Nell's AVM's or at least control them. I don't know how long it will take for her to get back with me, however I do know that patience is NOT one of my virtues so I hope that is is soon.

Thanks for listening. Talk with you later, Sarah
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  #4  
Old 01-07-2006, 07:27 PM
juliemn juliemn is offline
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Default Re: Is there a way to stop AVM's from developing in the 1st place

Here's hoping that Dr. Burrows gets back you quickly!

Ironically...Ben has met her. I haven't. We just returned from New York and embolization with Dr. Berenstein. Dr. Burrows observed his procedure.

From what I've been told, AVM's don't technically grow the way we picture something growing. Though there is one case I know of in which the AVM seems to grow...perplexing the doctor a bit. The do "regrow" or recruit. (Search revascularization, recanalization, collarteralization.) What happen's in AVM's is that the blood flow and arteries increase. Eventually the excess blood flow starts to steal circulation from the surrounding tissue. This is how I perceive the process.

Example (I'll use Ben):

*12/2004 - found an AVF in his brain, with a single artery involved.

*2/2005 - Coil embolization of AVF. Per the doctors it was 99% successful.

*8/2005 - MRI shows revascularization of the AVF

*10/2005 - Consult with Dr. Berenstein. He says the AVF has "regrown". There are now 6 arteries involved. Evidently coils are big NO NO with AVF's. Hindsight.......20/20. Very upsetting!!

*12/2005 - Glue embolization with Dr. Berenstein. They were able to embolize 2 of the 6 arteries...resulting in a blockage of about 90% of the blood flow to the AVF. We're ecstatic with these results. This was a tricky embolization as Dr. Berenstein had to detour around the coils already in place, and perform the embolization through the "back door" so to speak. (He called it taking the detour around the accident on the freeway.) Ben was gone for 7 hours, backing up Dr. B's whole surgery schedule that day.

We hope that the remaining arteries will be tricked into occluding or giving up now that they have been deprived of most of their blood flow.

---------------------

So...we go in and embolize, or in certain cases try to surgically remove them. Both of these procedures are trying to trick the nervous system into stopping the recruitment of the vessels that make up malformation. This is why partial surgical removal of the nidus of the AVM can have such disastrous results. The nervous system will retaliate by trying to set things right again...and can become overagressive in it's vessel recruitment. Which is exactly what happened to Ben when the wrong embolization technique was used.

So stopping it before it starts would require stopping the nervous system from telling the vascular system to form the AVM. The magic cure I suppose would be some type of preventative drug or vitamin taken in early pregnancy. The way folic acid works to help prevent certain congenital birth defects. And then there's the acquired AVM's...which I haven't spent much time reading about.

The study they're doing at Boston is very exciting. It is suggesting that angiogenesis may be involved in other vascular malformations that are not hemangiomas. In that case....I guess the malformation would technically be "growing", actually forming new vessels rather than recruiting them. The urine test...as the article says...may also be able to tell how aggresive the malformation is.

We've actually been lucky in Ben's case. His AVF is not a Vein of Galen malformation. Many babies that have a Vein of Galen AVF go into heart failure quickly...sometimes before birth. Ben's missed the Vein of Galen by "not much". His involves the Vein of Rosenthal.

We haven't even addressed the malformation in his face yet...as we're concentrating on the brain right now. The one in his face is very small at this point. We think he may have one in his hand and a couple on his legs....but again we haven't tested as they are very small.

So we're anxiously awaiting results from this study also.

Sorry it got sooooo long....reads like a darn textbook! LOL

Julie H

edited to say: I meant to say if angiogenesis was involved after the malformation had already formed....it would technically be "growing".
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  #5  
Old 01-07-2006, 08:11 PM
Sarah H
 
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Default Re: Is there a way to stop AVM's from developing in the 1st place

WOW, You explained things tremendously well. I will "google" the terms that you gave in your response and see what pops up. I just thought there has bound to be some way to "reprogram" your body to quit making abnormal blood vessells. Also, I wonder why there bodies make abnormal blood vessells in one area and not in another. Certainly, surgery has never been the answer for my daughter; however, the one time when she did have sclerotherapy it worked pretty well for a bit; they have never been able to do her foreaslerotherapy on her forearm because of the many blood vessells, the magnitude of her AVM, and because of the actual size of the vessells, they said that they are too many/too small.

I hadn't thought of her body trying to "correct" the surgery by going into overdrive to try to replace the vessells that have been taken out; however that makes sense.

I have to consider that we are fortunate because the only areas that are involved with my daughter are her right hand and forearm. As far as we know, she does not have them anywhere else.

How do you know when to be aggressive and treat the AVM and when to just sit back and watch the progress of its growth? As I may have mentioned, I do not possess the virtue of patience. Talk with you later, Sarah
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  #6  
Old 01-09-2006, 03:53 AM
juliemn juliemn is offline
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Default Re: Is there a way to stop AVM's from developing in the 1st place

Quote:
Originally Posted by Sarah H
How do you know when to be aggressive and treat the AVM and when to just sit back and watch the progress of its growth?
Ahhh.....that IS the $64 question isn't it?

I guess at that point, finding a really good doctor would make all the difference. From reading of her reputation, I think Dr. Burrows is a good choice for that question.

Julie
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  #7  
Old 01-09-2006, 11:51 AM
Sarah H
 
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Default Re: Is there a way to stop AVM's from developing in the 1st place

I thought I would call today to see if they have received Nell's MRI's and to see where Dr. Burrows was in the review process. I hate to be pushy; however if I don't call and for some reason they haven't received her MRI's then I need to find out what happened; yet again, if they have received them I'll seem like the impatient Mom that I am.

We have always taken the let's wait until Nell can't stand the pain anymore then we try to do something; which to me is not a great way to react; however that is what we were told was the best way to treat AVM's. (To me that is sort of like putting your seatbelt on after you have had your wreck.)

I just had a thought, do you know if there is a connection with AVM's and other anomilies? My other two children have a condition called Long QT syndrome and I wondered if there happened to be an association.

Talk with you later, Sarah

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  #8  
Old 07-20-2006, 12:41 AM
tallred32
 
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Default

an avm occurs in one in 10,000 births, there is no medication.
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