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Old 10-08-2002, 08:09 AM
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Default AVM's of the extremities

I am a 19 female with an AVM in my left foot. Though I have met others who have had AVM, they were always in the brain or spine. I would love to meet others, esp. those close to my age, with AVMs affecting the limbs, seeing as it is a completly different experience that having one in the brain or spine. I currently reside in Chicago and have had aprox. 27 embolizations over the past five and a half years at Northwestern Memorial Hospital performed by Dr. Robert Vogelzang. Please feel free to email me anytime at norascholle@hotmail.com
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Old 11-12-2002, 07:33 AM
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Default Re:AVM's of the extremities

My eight year old son has recently been diagnosed with an intramuscular venous malformation located deep in the arch of his left foot. We are just beginning to seek treatment options ie. sclerotherapy in the U.S. and will be visiting a few doctors over the next three months to choose a treatment plan. We presently reside in Calgary, Canada. I definitely would like to speak with you further. I have encountered only ONE other person so far, although the website is now defunct, with a VM of the foot. I assume that you have had some success with your treatments, although 27 embolizations does seem like a lot to go through in 5 years.
My son's pain level is manageable now with Ibuprophen but it definitely has affected his quality of life. He has never developed a normal walking gait and avoids weight bearing on his foot most times prefering to walk on his heel as if he's in a walking cast. He of course cannot participate in most physical activiity. I'm wondering if you have similar symptoms and if puberty exxagerated your symptons?

I'd be happy to hear from anyone with a similar affliction in the extremities. . .
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Old 11-13-2002, 04:28 AM
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Default Re:AVM's of the extremities

My daughter was just diagnosed with Parke-Weber Syndrome by the Boston Childrens Hospital. They reviewed her MRI, Dopplar, and pictures of her and came to the conclusion that it is Parke Weber Syndrome. I am scheduled for an appointment in January, being I am living out of the country now. Melanie´s left thigh is 5cm wider then her right and she has appox. 1 cm difference in length. Melanie left leg is very warm to touch and has slight redness. Melanie is a normal active 7 yr. old and has no pain or problem walking. I am very confused of what the future holds for Melanie and I am just curious if any other parents have had their child diagnosed with Parke Weber. If anyone know where I can get more Information about this vascular malformation PLEASE help us with our insecurities. Boston Childrens Hospital has been extremely wonderful. But I was just wondering if anyone has gone through what we are going through and what the future holds for our precious child.
??? I would love to here from anyone out there. They say we just have to sit and wait. Puberty they say is when we have monitor Melanie more. ???
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Old 11-14-2002, 04:21 AM
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Default Re:AVM's of the extremities

For the past 30 yrs. I have lived with a venous malformation of the right side of my face. I underwent 4 or 5 surgical procedures to correct it; however, nothing was 100%. If there is someone out there that knows what I am going through, please send an instant message or e-mail. Thanks.
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Old 11-29-2002, 02:38 AM
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Default Re:AVM's of the extremities

We too are headed to Boston in January. My daughter has a likely VM on the ball of her left foot. It was diagnosed as fatty tissue when she was born, but has grown as she has. (She is a very large 2-1/2 year old at 39" and 37 lbs.) She also has an AVM on her spine, but they won't know where until they do the angiogram. Apparently it is very unusual to have 2 malformations so far apart, so we are concerned there are more. While the AVM doesn't seem to cause her pain, the VM on her foot is torture. Her foot is curled up because she walks on the side, so she has pain both from the VM itself and from walking improperly. She is very, very active but clumsy. It doesn't stop her from jumping up and down (on the side of her foot) but causes her to fall a lot. We are hoping to have it all treated at one time and will then be headed to PT to correct the gait.
I feel for the young woman who has had so many embolizations! That makes me nervous about my own daughter. Have you tried Dr. Alejandro Berenstein at Beth Israel in NYC? He's a jerk but seems to be very talented. (Costly too -- not on network. They expected $350 immediately when we walked into their office but didn't warn us about it ahead of time.) Not good with kids, but hopefully he's better with adults.

To the mom in Calgary, I would send a packet of info to Dr. Patricia Burrows at Children's Hospital in Boston. (Letters to docs, MRI reports, etc.). She is an amazing woman, extremely sympathetic and very, very prompt in replying to correspondence. (She calls you directly --doesn't have her secretary do it.) We've been to Chicago, Wilmington, DE, and NYC so far, and Dr. Burrows has the most expertise by far.

My heart goes out to all of you!!!
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Old 12-14-2002, 03:44 PM
His Alone
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Default Re:AVM's of the extremities

I can't believe ater how many years I have possibly found others?....??

I have to clarify first. It would seem that most of the posts above me they or their children have imbedded AV malformations. Nothing evident on the skin itself. Correct?

That's me. I am 24 years old and have been receiving treatment since I was ten.
I have a tumor, AV malformation - venous hemangioma that keeps growing back inside of my left lower leg.
It started out growing in my ankle. My mother noticed the problem but by the time the doctors would listen to her and actually invesatigated it (they declared I had a pulled muscle. My mother knew better )
This would have been 14 years ago and there wasn't any sort of protocol.
I have to get off but I have plenty to share and wouldn't mind email either. I'll slip back tonight hopefully...or sooner.

God bless,
His alone
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Old 01-11-2003, 05:57 AM
His Alone
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Default Re:AVM's of the extremities

Oh well.

God bless -
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Old 03-20-2003, 07:17 PM
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Default Re:AVM's of the extremities

Hi my name is nikki and i have a 4 year daughter who i've been told by the hospital that she has an articular venus malformation and I dont seem to be getting any further forward with regards to information about it and i would like to know if anyone has a list of doctors who specialise in this field in the UK as I dont really know anything about it and im not happy with my present consultant any replies would be greatly appreciated

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Old 04-25-2003, 12:52 AM
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Default Re:AVM's of the extremities

Wow! I can't even express this sense of relief to find that other people are experiencing the same medical problem as my husband. He is almost 25 and has had hemangomia problems with his left foot/leg all of his life. It wasn't until recently that we have found out exactly what he has (he's been told many incorrect things). Within the past year, his pain is worsening and he can only tolerate small amounts of physical activity. We can barely get any information from our doctors, much less be taken seriously about his pain/symptoms. This is really stressful for him and we both have A LOT of questions. If anyone is willing to chat with us, we would really appriciate it. Thanks. ???
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Old 05-02-2003, 07:16 AM
Lisa R.
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Default Re:AVM's of the extremities

Hi, this is my first reply. I am 43 and have had numerous surgeries on my hand and arm. I am going to have an MRI and angio-venogram done next Wednesday on my arm, chest and neck in hopes of having embolization therapy done to help control the pain. I tried to email you and it didn't go through, I'll try again but please feel free to e-mail me anytime. Take care and God Bless.
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