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  #11  
Old 02-01-2006, 05:08 PM
stellar_x
 
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Default Re: AVM Left Arm

I had treament (Embolization sp?) Last week in NYC @Lenox Hill Hospital (Dr.Rosen)
The two middle fingers and elbow were treated. I am having some pain in the untreated
areas. The two treated fingers are stiff but not painful. They are still large as the veins
were large (dialated) in the fingers. I am wondering now if it will subside to feel/look like
normal fingers. Again, its only been a week. I figure I would give it another 1-2 weeks to see.
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  #12  
Old 02-02-2006, 12:17 AM
Sarah H
 
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Default Re: AVM Left Arm

What exactly did they do for the embolization? Did you like the hospital? How long did it take? What type of after care do you have? Was this your first type of treatment? Sorry about all of the questions but we will be going through the same type of thing in May and I wanted to have all of my facts beforehand.

My daughter had sclerotherapy several years ago at Mayo and other than the first day, she had no pain (maybe on the flight home...but nothing much to speak about) I'm wondering if they were more aggressive with your treatment than with my daughters.

If you think I'm being too nosey, just tell me and I'll hush up. Talk with you later, Sarah
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  #13  
Old 02-02-2006, 04:54 PM
stellar_x
 
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Default Re: AVM Left Arm

nah its ok.

It was the first treatment. The hospital was ok. The did put me to sleep during the treatment.
It took about an hour and a half. The Embolization procedure is an injection of an agent to the
affected areas. No pain in the treated areas just in the ones that weren't touched.

Since it was the first treatment they kept me overnight to see how I took to the treatment.
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  #14  
Old 02-03-2006, 10:14 PM
Sarah H
 
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Default Re: AVM Left Arm

I wonder why it hurts the ones that they didn't do? Is it somehow related to the pressure of the blood trying to flow through the blocked arteries, then that puts pressure on the surrounding tissues?

One of the great things about Mayo is that we had one doctor coordinating the whole shabang, I'm concerned that we won't have that same personal care. Also, Mayo was on the conservative side, I don't want Dr. Burrows to be tooooo agressive with treatment and cause some type of function loss, but then I want her to be aggressive enough that we don't have to do this too often. Did you feel the same way?

Can the AVM grow so much that you have functional loss? Right now, it is basically pain, tingling and numbness that are the big "issue". When an AVM grows and takes over part of the muscle, once the AVM is removed either threw surgery or sclerotherapy, can the muscle regain its strength and function?

Thanks for any help that you can give. Talk with you later, Sarah
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  #15  
Old 02-03-2006, 10:27 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 132
Default Re: AVM Left Arm

Sarah,

I can answer your question about the functional issues. I have a VM not an AVM, but mine is very deep in the muscle and in the joint..and when my VM was at it's worst I could not use the arm..since the sclero I can but I did need physical therapy..

Hope that helps..

Kristie
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  #16  
Old 02-08-2006, 04:39 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: AVM Left Arm

Sarah,

I think that Dr. Burrow's is well like by her patients from what I've read. I hope you have a good experience with her.

Julie
__________________
Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #17  
Old 02-11-2006, 02:20 PM
Sarah H
 
Posts: n/a
Default Re: AVM Left Arm

Hi, That's good news to hear. I certainly don't want Nell to loose any function of her hand/arm because of new growth, so making the decision to have more aggressive treatment is going to be a wise choice. Thanks for your help. Talk with you later, Sarah
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  #18  
Old 07-20-2006, 12:10 AM
tallred32
 
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Hi tom.
I also have an avm in my right forearm, it hurts like heck. Embolization is covered under insurance you have just got to check with your carrier.I also need a new doctor in new york they are hard to find these days as this is a speciality that no one know about

Lauren
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  #19  
Old 07-20-2006, 12:11 AM
tallred32
 
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does dr.rosen deal with avm's in all parts of the body and do you have his contact info?

Last edited by tallred32 : 07-21-2006 at 12:03 AM.
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  #20  
Old 02-14-2007, 10:32 AM
r-temy
 
Posts: n/a
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Hi all,
I've got the same problem. Male, 26yr, live in Moscow, Russia.
When I was born it was only a bluish stain on my palm.
By the age of 4yr it had grown langer and covered my left arm from elbow to fingers. Simptoms are the same - left arm is heavy with blood when the hand is down, and the blood flows down when the hand is up for a while. Some mornings are very painful. When I was 8yr several surgical operations in Moscow were carried out on my left hand, but there were some complications. As a result I'm missing 2 fingers. Now I am starting to examine mordern methods of treatment availiable in Russia... and abroad (that's why I'm here). As far as I understand from materials available online sclerotherapy is the most efficient and safe method.

stellar_x, how is your arm after threatment? Hope everything is ok.

KristieinStMarysGA, your story is interesting to me as well, as your occasion is also very similar to mine.

At the same time I am trying to learn if AVM is an inhereted desease (i.e. i'm trying to understand if this AVM will be inhereted by my children).

If needed, my contract data may be found in my profile.
Thanx
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