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  #1  
Old 08-17-2005, 02:10 PM
stellar_x
 
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Default AVM Left Arm

Hello,

I am a 28yr male whom has AVM on my left arm. Started as purple fingernails then progressed up to my elbow.
I am currently searching for a surgeon in the NY area who can look at this. I am very worried it of late
as when I sleep on it I get the worst pain once could feel. Does anyone have any resources? Is embolization
and or Schlerotherapy covered under insurance?

Thanks,
Tom
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  #2  
Old 08-17-2005, 07:06 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 132
Default Re: AVM Left Arm

I sent you a PM...


Kristie
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  #3  
Old 08-17-2005, 08:09 PM
stellar_x
 
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Default Re: AVM Left Arm

Thanks Kristie,

I PM'd you back.
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  #4  
Old 08-22-2005, 02:28 AM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95
Default Re: AVM Left Arm

Living in New York gives you a couple of great options for medical treatment. Check out the find a doctor page on this site, there are a couple of them listed.

Good luck
Julie
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Mom to Ben (multiple AVM's, PWS, SWS)
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  #5  
Old 11-29-2005, 07:57 AM
crissy
 
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Default Re: AVM Left Arm

steller x
My husband is 24 and also has avm's in his left arm. What info did you find out? Would like to stay up to date on anything new to help him.
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  #6  
Old 12-18-2005, 03:10 AM
Sarah H
 
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Default Re: AVM Left Arm

Hi, I'm trying to find out as much info for my daughter as possible. She has an AVM in her right radius, ulna and fifth metacarpal and the surrounding tissues. She is currently seeing a doctor at Mayo (whom we love and gives us an unbelievable amount of attention and time however, it is a 13 hour drive one way for us to get up there, plus his experience with AVM's like my daughter's is limited. Do you know of any one in the Kentucky area that is good?

What succussfull treatments have you all found?

Thanks for any help that you can offer. Sarah
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  #7  
Old 12-19-2005, 05:36 PM
stellar_x
 
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Default Re: AVM Left Arm

Ok -
I made some headway on my condition. I met with Dr. Levitin and Dr. Waner in Oct. From there I was
referred to Dr. Rosen which I met with just last Friday.

Turns out I have VM and not AVM (Veins only)- For some time the pain I suffered from sleeping on the arm
was thought to be (from what I was told in the past) bleeding into the tissue. Dr. Rosen debunkt that and
clarified it was the "Pressure" from swelling which made alot of sense.

I have decided to go with Schlerotherapy but have to have a bunch of tests as prerequisites to the Treatment.
My first treatment is scheduled for Jan 17th. I will post updates on my progress with Pics (if I can get them).

There is hope out there for all of us!!!
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  #8  
Old 12-19-2005, 05:40 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: AVM Left Arm

I replied to you on another post. *Unfort. there are not very many docs around the U.S. that have experience in treating AVMs. *Too other ideas based on your location is to email Elissa Rifkin... she is a board member of vbf ( you can find her on ask the expert)... *she lives in St. Louis and helps out at the vascular clinic once per month...she can give you feedback on docs there. *The other idea is Cinci clinic in Ohio... Dr Denise Adams is the contact person for clinic (be aware that any films sent to this clinic will end up in a charge to read by a radiologist). *If you want the highly recommended/experienced in AVMs... Dr. Burrows in Boston and Dr. Waner/Berenstein in NY,.

Corinne
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  #9  
Old 12-19-2005, 06:37 PM
Sarah H
 
Posts: n/a
Default Re: AVM Left Arm

Hi Corinne, Thanks for the info. Liz contacted me yesterday and recommended Dr. Burrows. I have e-mailed Dr. Burrows, as well as, left a message at her office. I haven't heard anything thus far but I just did that this morning. Certainly, we would want to go with the most experienced expert in the field. Although having someone close by would be helpful.
I hope that we will find out something soon.

This website is such a blessing for us. Not only can we find a lot of vital information but we can discuss issues that we have dealing with AVM's. I have been reviewing my "notes" from when we first found out about my daughter and I spoke with Linda Shannon way back in 1995. I didn't realize that she was the founder of this website. It certainly is a small world. Talk with you later, Sarah
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  #10  
Old 12-19-2005, 09:06 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: AVM Left Arm

Sarah, I am going to send you a private message with Tricia's (RN, I believe) email address... she organizes the patients and the doc meetings...they meet as a team once per week to discuss cases... I am not sure if she is the contact person for Dr. B specifically...but I know she does organize the patients for the group discussions.

Corinne
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VBF Director of Family Services
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