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  #1  
Old 09-05-2005, 12:07 AM
gina0291
 
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Default Venous Malformation

Hello
I am looking for info regarding Venous malformation. Our 8yr old daughter Christy has a venous malformation, quite extensive left leg from perineum throughout leg to foot. I am interested in othher similar cases. She has issues of pain involving left knee. has been recommended that we have a sclerotherapy treatment to this local lesion behind the kneecap.
I am very comfortable with the diagnosis as dr burrows diagnosed her. our local docs called it everything but a VM. It is only venous, no arterial or lymphatic involvement.
When is treatment necessary..is it best to hold off on treatment as long as possible? I am innterested in hearing posts from others who have similar diagnosis, esp. location as Christy...leg.
I am interested if leg leght discrepencys exist, swelling etc. At this time thhere is a 2cm leg length discrepency with Christy. Shhe does not have swelling except for the knee, occasionally. When the knee swells it is after activity. She is quite active!
Any information will be greatly appreciated!
Gina
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  #2  
Old 09-08-2005, 10:52 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: Venous Malformation

Gina,

Hi my name is Kristie and I have a VM throughout my left elbow/forearm, I saw your posts on the MSN site and figured I would post on here as I am out of town and not at my PC, I am due home on Monday and will respond more, but I just wanted to let you know I am not ignoring you and will get back to you..


Kristie
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  #3  
Old 01-11-2006, 03:33 AM
margie
 
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Default Re: Venous Malformation

hi, my name is margie. My son had a similar case. At the time they called it just a hemangioma. He was 14 years old at the time. It was located on his upper left thigh. He had a small strawberry mark where it started to grow. It would get as big as a baseball when he would sit in certain positions. Looked like a big bump under the skin with a bluish tint to it. We went to a wonderful oncologist at UC Davis and he removed the hemangioma as agressively as he could. My son is 21 years old now and has never had anymore problems with it, except if he did sit for any length of time it would start to ache. Now this last week, he has been having problems and thinks he feels it growing back, it is hurting him and he feels knobs of something again. We are going to make another appointment to see the same dr. We were told that it had a high chance of growing back.
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  #4  
Old 01-31-2006, 02:05 AM
Sarah H
 
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Default Re: Venous Malformation

Hi, I was reading your posts. Kristie I didn't realize that you had a VM of your arm/elbow. What treatment have you had, who did the treatment, and how successfull was it?

Hi Gina, I am relatively new to this site (December 2005) as well and am always looking for info. I'm glad that you found it, it has been a godsend for me. I hope that you have the same positive experience.

Talk with you later, Sarah
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  #5  
Old 02-01-2006, 12:34 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: Venous Malformation

Hi Sarah,

I have had sclero. done with Dr.Yakes out in Colorado. It was successful, although requires more treatment. It was a pretty easy thing to deal with as well, recovery time was minimal and the pain was tolerable with motrin, the vicodin he prescribed wasn't needed.

Kristie
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  #6  
Old 02-01-2006, 05:52 PM
stellar_x
 
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Default Re: Venous Malformation

Hey Kristie,

I pretty much have the same VM as you (left arm) Hand, forearm, elbow.
I had treament in NYC (DR Rosen) on January 24th (last week) and it was Embolization (Injection of an "Agent")
into the large superficial veins. Now the untreated areas are giving me pain (clotting) but seemed to ease up on me.
The two fingers I had treated are stiff. I am hoping that the large veins will shrink up or go away.

As of today they look like they always have. What kind of treatment did you have and can I expect the treated areas
to shrink or disappear?

Also, If you have any before/after pics I would like to share yours and mine if possible.

Thanks,
Tom
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  #7  
Old 07-20-2006, 01:14 AM
tallred32
 
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Default

i have an avm in my right forearm as well
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  #8  
Old 11-06-2006, 07:16 PM
dani617
 
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Default Response to post re: Venous Malformation

Hi. I am responding to the post regarding your daughter, Christy. Our daughter has an extensive glomous venous malformation which covers her chest, stomach, pelvis, arms, left leg down to her foot & toes. She is almost 3 1/2 years old. She has been undergoing embolization procedures with Dr. Robert Rosen in NYC for the past year or two. She has the procedures done every 3 months or so. The reason we started with them was because she was limping and favoring her right leg because she was having pain in the left leg/foot. They have also treated behind the knee because they were concerned about the ligaments, joints of the knee. We were told it is best to treat these types of malformations when the child is small as the malformations tend to grow as the child grows. Her left leg is longer than the right and she currently sees a pediatric orthopedist for bone age x-rays and bone scanograms every 6 months so they can monitor the growth of that leg vs. the other. Her left foot is also much bigger than her right to due to the malformation. She had a procedure 2 weeks ago and has been running around on it already for the past week already. We were also advised that it is best to have these procedures done when they are young b/c they bounce back so much quicker than adults (which is definitely true). I am not sure if you were told but there are certain times that the growth of the malformation will speed up, i.e., puberty, pregnancy, etc. I am not sure where you are located, but all of our daughter's doctors are in NYC, however, we have been to Boston Children's Hospital and Philadelphia Children's Hospital as well. I do have one question for you given your daugther is older. Has the growth of the malformation slowed down at all since she was younger or is it getting bigger at the same rate? Does she tell you what exactly it feels like when it hurts? Feel free to contact me if you have any questions. We also would appreciate any info you have for us since we do not know anyone with this condition (or anyone who has ever heard of it!)
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  #9  
Old 07-15-2008, 04:51 AM
thill thill is offline
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Join Date: Jul 2008
Posts: 1
Default Venous Malformation

Hi, My daughter 7 has several Venous Malformations in her face. They have recommened surgery to remove?? We are looking for any info we can get. We will have to travel to NY for surgery. We are just suppose to come. We have not met with a doctor that has given us any information. They were found in Feb. Thanks
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  #10  
Old 01-08-2009, 03:46 PM
shelley shelley is offline
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Join Date: Mar 2003
Posts: 3
Default Venous Malformation

THILL,

MY NAME IS SHELLEY AND MY SON, ZACH, WAS BORN WITH A VENOUS MALFORMATION THAT ENGULFS THE ENTIRE LEFT SIDE OF HIS FACE. HE HAS HAD NUMEROUS LASER AND SCLEROTHERAPY TREATMENTS. HE RECENTLY HAD AN EXCISION SURGERY IN OCTOBER OF 2008. IF YOU WOULD LIKE TO TALK, YOU CAN EMAIL ME @ HOVESHELLEY@HOTMAIL.COM. YOU CAN ALSO SEE PHOTOS OF ZACH ON HIS CARINGBRIGE SITE:

http://www.caringbridge.org/visit/zacharyh

BEST WISHES!

SHELLEY
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