AVM Right Arm - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 12-19-2005, 03:32 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: AVM Right Arm

The two places that come to my mind on the east coast are in Boston and New York. My son is has been treated in New York sucessfully. In fact we just returned home from embolization a couple of days ago. I know there are others, but I'm not familiar with them.

Boston Children's Vascular Anomalies clinic

Center for Endovascular Surgery (I think this center specializes in head, neck, and spine though)
1000 10th Ave
New York, NY 10019
212-636-3400
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Julie H
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  #12  
Old 12-19-2005, 11:46 AM
Sarah H
 
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Default Re: AVM Right Arm

Hi, I was given the name of Dr. Patricia Burrows. I have e-mailed her and will give her a call today; hopefully, she will have the knowledge, experience and "disposition" that will fit our needs. (When we were first trying to figure out what was going on with my daughter, we came across some pretty arrogant doctors with no compassion. Thankfully, her doctor at Mayo Clinic has been a wonderful person to deal with.)

Thanks for your help. Keep your fingers crossed that this doctor will be the one that works. Talk with you later, Sarah
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  #13  
Old 12-19-2005, 12:39 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 132
Default Re: AVM Right Arm

Quote:
Originally Posted by Sarah H
Hi,* I was given the name of Dr. Patricia Burrows.* I have e-mailed her and will give her a call today; hopefully, she will have the knowledge, experience and "disposition" that will fit our needs. (When we were first trying to figure out what was going on with my daughter, we came across some pretty arrogant doctors with no compassion.* Thankfully, her doctor at Mayo Clinic has been a wonderful person to deal with.)

Thanks for your help.* Keep your fingers crossed that this doctor will be the one that works.* Talk with you later, Sarah
From what I have heard Dr.Burrows is fantastic, and if I am not mistaken she did train under Dr.Yakes. So if you end up choosing her, she is fantastic and your daughter will be in great hands!
Good Luck
Kristie
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  #14  
Old 12-19-2005, 05:34 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: AVM Right Arm

Sorry Sarah I;ve been away from my computer for a couple days. I do not have an AVM...but my position with the vbf is to help the families find help.

The above replies to you are similar to what I would have recommended. Dr. Burrows in Boston, Dr. Waner/Berenstein in NY. You want to be where the docs have an extensive amount of experience with AVMs.

Keep us updated on your progress in finding help.

Feel free to email me anytime

Corinne
rinner @ comcast. net (no spaces)
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  #15  
Old 12-19-2005, 06:40 PM
Sarah H
 
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Default Re: AVM Right Arm

Hi Corinne, I just e-mailed you on the other page. Thanks for your help. I'll keep you updated. Talk with you later, Sarah
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  #16  
Old 07-20-2006, 12:20 AM
tallred32
 
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i have a avm in my right arm and truly i can say that it does stink. The blood flow is so great as i use both arms each day as i am no supposed to i get shooting pain to remind me that it is there. The avm feels like your heart pumping in your arm.
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  #17  
Old 07-20-2006, 11:04 AM
tallred32
 
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there is never a grim outlook with an avm just a different outlook on yourself. I have had an avm since i am 10 yrs old and i am now 32 .I just want it gone at this point but unfortunately there are no medical advancements in science or none that i know of at this point to do that for me.
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  #18  
Old 01-02-2013, 09:40 PM
metoo metoo is offline
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Join Date: Jan 2013
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when I was 19yrs old I married a wonderful man, RJ. The day after my wedding My husband when to have a special surgary done. I had no clue what it was or why he was even having it. He just told me that he had AVMs. I was still clueless some while He hadhis shoulder and arm fixed.... I went and researched. at this time, which was 1999 I only found a little bit about this. All I could really think of was that he had signed a paper giving him the pros and cons of this procceger. And how there was a 50/50 chance of life.... or hand and arm use....still confused and scared. I had just gotten married and now what would I do? when he came out he could not lift his hand. He had damage on the nerves in his right hand and had to ware a brace to keep his hand up . after that he when thru this prosses every 6 to 9 mths. depending on the pain. then in 2009 he had a new procegger done. Glue..... now he only goes once a year. Its good but I PRAY that one day he will not have to go thru this anymore. So times it gets so hard because I still have to help him do some things that he can not do. does anyone know a good Dr or a new way of getting rid of these AVMs. He now has them in his right shoulder to his hand, behind his right knee, and right side. and the back of his calf. and I did not know that this could spread or grow more....... now he has a bomp on the back of his head to the right.....has not checked it yet but I am prying that its not an AVM.... PLEASE GOD.
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  #19  
Old 02-06-2013, 10:04 PM
dancermom dancermom is offline
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Join Date: Jun 2012
Posts: 44
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metoo, I am sorry to hear about your husband. Having so many avms means that your husband may have an underlying condition. There are several possibilities: HHT, Cowden Syndrome, neurofibromatosis, perhaps one or two others. Your husband needs to be screened for these conditions by a doctor who is knowledgeable. What area of the country do you live in?

I would also recommend you join AVMSurvivors.org, where there are other members who have these conditions. There are studies being done now with the drug Rapamune (Sirolimus), an antiangiogenetic drug which may help to prevent the progression of AVMs. It is a serious drug with serious side effects, but it is worth your speaking about to your husband's doctor.

Also, I don't know if you have children, but it is possible that your husband's condition could be inheritable by your children. Your husband should consider genetic testing.

Last edited by dancermom : 02-06-2013 at 10:04 PM. Reason: error
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