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  #11  
Old 04-28-2004, 02:11 AM
catgurl23
 
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Hi, I'm 17, and I have been TOLD for several years that I've had a hemangioma and not to worry about it because it SHOULD go away after puberty. I've only just learned that I think I DO have a Venous Malformation! I'm very frustrated. In the past, the only problems I've had since I was 9 or 10 were extreme pains in my leg, and minor loss of mobility. Lately, I've had more intense pains... (all day and some nights), and I've been begining to loose a little circulation in my toes from time to time. I had almost given up on ever finding treatment before coming to this web site and learning the truth about my condition. I've had three sclerotherapy treatments when I was younger (all unsuccessful) and I'm not really sure what to do from here.
I'm very angry that my Doctors, who acted sooooo rude and condescending to me, misdiagnosed me for all these years. Please! someone w/ a similar problem... tell me what treatment YOU are undergoing, WHO you are seeing, and if there is anything that can help me!
cathymay05@hotmail.com,
*please put Vascular in the subject or something similar, so I don't delete in fear of viruses.
THANKS THANKS THANKS.
~*~Catherine~*~
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  #12  
Old 04-28-2004, 03:13 PM
Lise
 
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Cathy,

I've sent you an e-mail.

Lise
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  #13  
Old 06-16-2004, 11:42 PM
christopher
 
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Hey guys I know how frustrating it can be trying to find help for these kinda things. I am just recently trying to get help becuase no doctor ever wanted to help me, and I live in a pretty big city. Hopefully I will go to either San Fransico or L.A to try and get help for my leg. For as long as I can remember they told me it was a hemmangioma when it turns out to be a VM. It's a slow killer to, It doesnt bother me too much but I know if I let it go it will consume me and maybe even spread to my organs (that would not be cool at all). Well anyways good luck to all you guys and I hope you get fixed and all better, c ya!
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  #14  
Old 07-03-2004, 11:53 AM
Kenziemom
 
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We have been told for the last 8 months that my daughter has a hemangioma (she is 10 mo. old). She has undergone 5 laser surgeries, and one part of it keeps growing back. Hers is on the corner of her bottom lip, and they down the back of her lip and a little bit along her inside cheek. One part is not responding, so the dr. is thinking that it may be an AVM. It grows back a few days after treatment. He wants to excise the spot, send it to pathology, and see. He mentioned that if it is an AVM we would need to do an MRI, and possibly steroids, or angioplasty.

Although I'm feeling better after reading this thread, I'm still worried about the possibilities of all of this. Another daughter had a heart defect, so this doesn't really match in fear for her, but I am concerned about steroids in small children, and the other treatments.

Do these things recur for a person's entire life? Is it possible to ulcerate internally and not know it? What other treatments have people had to go through? Thanks, Kelly
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  #15  
Old 07-03-2004, 08:07 PM
Lise
 
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Hello Kelly,

I have an AVM of the lower lip. What I think is that your daughter should have an MRI (+ maybe an angiogram) before any kind of surgery is performed on her lip. A surgery and/or treatments by an interventional radiologist could afterwards be done by a doctor who has experience and complete knowledge of vascular birthmaks. In other words, what I say is "don't let the AVM be touched by any doctor who is not fully qualified", AVMs can get worse after medical interventions that are not done properly. It is paramount: the radiology exams should be done before any surgery, and not afterwards.

Lise in Montreal
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  #16  
Old 07-06-2004, 09:31 PM
nickbar nickbar is offline
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I want to ditto Lise. It is important to have an interventional radiologist involved in the surgery. The feeder vessels need to be controlled.

Corinne
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  #17  
Old 07-07-2004, 01:45 AM
Lise
 
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Corinne,

What I meant is not exactly what you seem to have understood :-\. There are three ways of treating an AVM:
1)embolization alone, by an interventional radiologist,
2)surgery alone, by a surgeon,
3) embolization followed by a surgery.

An expert like Dr. Waner could decide that the AVM does not require controlling of the feeder vessels by the interventional radiologist. But it's not the kind of decision any doctor can make...

But what is always needed prior to treatment or surgery is a radiological exam (usually ultrasound + MRI, sometimes adding an angiogram which is another radiological exam, not a treatment).

I know I've had a hard time being clear on this topic... Sorry...

Lise (AVM of the lip)
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  #18  
Old 07-07-2004, 03:22 AM
nickbar nickbar is offline
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Default Re:H or VM

gotcha
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