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  #1  
Old 06-21-2005, 01:06 AM
Bobbismom
 
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Hello. I was on about a year ago with concerns for my then 1 year old, Bobbi, who had a huge bump on her right leg that was at first diagnosed as an H. We contacted Dr. Edwin Williams here in NY and were able to get in with him fairly quickly. After looking at her sonogram and her MRI. Dr. Williams told us that it was a Vascular Malformation and gave us a treatment that was non-surgical (which was a relief to us because we did not want to do surgery, but noone else had given us other options as to what to do.) So we tried the treatment (compression on her leg, which is very difficult on a 1-2 year old) So here we are almost a year later and about a month ago Bobbi* started "loosing feeling" in her right foot which was, as you can imagine, very painful. But after a few mintutes the feeling would come back, the one day a few weeks ago she lost the feeling again and it took hours to come back fully.* So after a quick consult with her pediatrician, Back to Dr. Williams today.
Before I go farther I should also tell you that in the last 7 months or so we have also been dealing with lead poisoning with Bobbi as well.
Dr. Williams feels that this latested development is from the lead poisoning, not the VM. However he did refer us to Dr. Waner in NYC is we wanted to rule out the VM as the cause of this.
If anyone has any experience in this or knows what to expect from here please please share. Myself and family are very concerned and worried. Thanks!

PS I have also attached a pic of Bobbi.
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  #2  
Old 06-21-2005, 01:11 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: VM Support

Hi,

I am 26 yrs old with a VM throughout my left elbow/forearm. I have had one treatment of sclerotherapy, which is a non-ivasive procedure. And I also wear a compression sleeve. I did lose feeling in my hand before I had my sclerotherapy, which my doctor thinks was because of the blood clots I would get.
Let me know if you have any questions!

Kristie
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  #3  
Old 06-22-2005, 01:18 AM
Bobbismom
 
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Default Re: VM Support

Thanks for replying Kristie. And I do have a question, what is sclerotherapy? In layman's terms that is.
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  #4  
Old 06-22-2005, 12:20 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: VM Support

Sorry, I should have explained that in my first post!
Sclerotherapy is when an interventional radiologist uses absolute alcohol, or a different agent, there are many but absoulte alcohol is best. They inject it right into the VM, which causes a clot in the VM and then "Bad" veins will shrink and the blood will not be able to flow through the veins.
It's wonderful, I was told if they performe surgery I would either bleed to death or lose my arm...so sclerotherapy was great!

Kristie
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  #5  
Old 06-22-2005, 04:29 PM
Bearsmom
 
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Default Re: VM Support

Sclerotherapy is a great thing. And there a different sclerotherapy for different problems. As in the case of my daughter with LM(cystic hygroma) her ENT injected her with Picibanil (OK-432) on May 4th. Yes she had some side effects, temp 99.9, pain but Aleve once a day helped, and swelling. But this is the reaction needed to scar the inside of the cyst so when the fluid is gone the cyst becaused it is scared grows together so lymph fluid can not go back into it. On May 17th it was as big as ever by June 5th one month later it you had to feel under her chin to know she had any problems. OK-432 works best on Macro-cystic LM, and research study is being done out of Iowa with 8 other places doing the injection and then sending info to Iowa. Any question e-mail me any time. Lora
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  #6  
Old 06-22-2005, 05:47 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: VM Support

I forgot to mention that your little girl is just beautiful!


What does he VM look like? can you see evidence of it on the skin?


Kristie
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  #7  
Old 06-22-2005, 10:44 PM
Bobbismom
 
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Default Re: VM Support

Thank you for the information. I have done a bit of research on this and that may be the way to go. It definitly sound better than surgery.

Thank you Kristie, I think she's pretty cute too, but I am biased LOL

Yes it is very noticable, about golf ball size just to the right of her right shin. I have been turned in a few times to our local child protective ppl cause other ppl thought I was beating her or something. it used to throw her balance off when she walked,but she has learned to adapt to that. Now it's the foot falling asleep thing.

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  #8  
Old 06-22-2005, 11:04 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
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Default Re: VM Support

You are in NY right? I used to live on Long Island, and none of the dr's there knew what was up with my arm. My parents were also questioned about my arm. When I was 10 or 11 I had two breaks in the arm (unrelated to the VM but did lead to the rapid growth) one at the end of school and one at the start of the next school year.
Sclerotherapy is really wonderful, It was not all that painful afterwards, and I am sure if that is what Bobbi has done, she will be fine with it, considering the pain the VM brings she should be able to tolerate it fairly well.
I recommend sending her info (MRI's, CT Scans) to Dr Yakes and get his opinon. Have you met with Dr.Waner yet? I know he is a surgeon, I contacted his partner Dr.Levitin, and he said surgery could also be done..but the sclerotherapy is working well for me at this point...

Keep me posted!

Kristie
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