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  #21  
Old 02-14-2007, 05:06 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Hi,


I hope you find help with your arm, I know how frustating this can all be. I am going through a bit of a rough patch and have been thinking about giving surgery a shot to see if it can be removed. I know sclerotherapy is best and it does work, but I cannot afford many more treatments and want to see if it can be removed.

I don't know if these are genetic, but I do want to share that my sister had a hemangioma at birth, and now an infant cousin has a hemangioma. It would lead one to think that they may be genetic. Guess will just have to wait and see.

Good Luck!

Kristie
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  #22  
Old 02-23-2007, 07:41 PM
r-temy
 
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Kristiein,

Sorry for late reply, I was sure I was going to receive a notice from the forum, but I didn't. I had a tough week and completely forgot to visit the forum. Tryed to contact you via personal messages, but hopeless.

Is sclerotherapy more expensive than surgery in US?

I don't want to frighten you, I only want you to know that the danger is real. I know a girl with AVM (left arm also) to whom surgery did harm. At that time we lived in one and the same city. After having 2 of my fingers cut, my parents decided to stop treatment, while she (her parents) continued treatment (surgery). Then suddenly she had a complication (I don't know what sort of complication) and eventually had her arm amputated till elbow and, which is most horrible, the disease followed up to her shoulder. Later she had her arm fully amputated and only then the disease stopped. Now she has a prosthesis. I know that medicine is developed and financed much better in your country, but I would recommend you to consult thoroughly with best doctors regarding any undesirable consequences.
Just be careful.

It is believed that in the future tissue engineering will be capable of growing up a separate arm out of a cell. And such an arm can replace the arm starving of AVM.

Genetics. As far as I know, hemangioma is not permanent and thus not that serious as AVM. Hemangioma usually disappears after 2 years. There is a so called McKusick’s database of genetic disorders. It contains over 5000 diseases believed to be of genetic origin. The problem is, venous malformations are not studied enough to be sure. Multiple VMs are on the list

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=600195

But there is still room for uncertainty and doubts. I have consulted genetics and they told me, that they could make a test described in the McKusick’s database, but they would not guarantee the result is true.

Take care and good luck!

Artem


Quote:
Originally Posted by KristieinStMarysGA View Post
Hi,


I hope you find help with your arm, I know how frustating this can all be. I am going through a bit of a rough patch and have been thinking about giving surgery a shot to see if it can be removed. I know sclerotherapy is best and it does work, but I cannot afford many more treatments and want to see if it can be removed.

I don't know if these are genetic, but I do want to share that my sister had a hemangioma at birth, and now an infant cousin has a hemangioma. It would lead one to think that they may be genetic. Guess will just have to wait and see.

Good Luck!

Kristie
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  #23  
Old 09-08-2009, 05:44 PM
armveins armveins is offline
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Hi, this post was from a while ago, but I wanted to say it helped to hear others with my condition. I have avm in my left arm. I was told schlerotherapy was too risky to even think about because it could paralyze my arm or something like that. Some days the pain makes me want to have no arm! I was told to look into the procedure where women get there leg veins lazered because part of it is a bump in my palm. Any thoughts if anyone is still out there.
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  #24  
Old 09-12-2009, 05:32 AM
nickbar nickbar is offline
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Please email Dr. Konez and Dr. Fishman on ask the expert page.
If you have any questions please let me know. You should receive the opinion from the specialists that treat AVMs with Sclerotherapy.
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  #25  
Old 09-18-2009, 07:22 PM
Cuety83 Cuety83 is offline
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Join Date: Jan 2008
Location: Rhode Island
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Quote:
Originally Posted by armveins View Post
Hi, this post was from a while ago, but I wanted to say it helped to hear others with my condition. I have avm in my left arm. I was told schlerotherapy was too risky to even think about because it could paralyze my arm or something like that. Some days the pain makes me want to have no arm! I was told to look into the procedure where women get there leg veins lazered because part of it is a bump in my palm. Any thoughts if anyone is still out there.
Hi!! A lot of people who have these lazer vein removals have normal veins.... Im sorry you are going through a hard time. I have CVM + KTS on my entire right leg, I relate with the pain, sometimes I think about amputation!! Just keep looking, I don't know much about lazers with AVMs. AVM is a malformation with your arteries which are deeper into your skin. Arteries also take bloodflow to the heart, which could be an issue with clotting, so that could be another reason they don't want to do sclerotherapy. Good luck!! and don't give up!! We shouldn't have to live with pain!!
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