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  #11  
Old 01-09-2009, 12:29 PM
Bonniesch Bonniesch is offline
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I am so glad I found you. My son is 13 With AVM on left side of face.
I'm off to work now.
Talk later. Here or at my other address.
bonniesch@verizon,net
Bonnie
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  #12  
Old 01-09-2009, 12:31 PM
Bonniesch Bonniesch is offline
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Please let's talk later. I'm out the door to work. My 13 yr old son has been battling this for 4 years. He needs to connest with others loke him desperately.
Bonnie
bonniesch@verizon.net
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  #13  
Old 03-03-2010, 02:07 PM
Jude Susie Jude Susie is offline
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I am a 36 yr old female with a VM on my upper right chest AND hemangeoma of the left cheek. I am also a mother of 2 young children (both with no symptoms of either). I received schlerotherapy treatment for my AV in 2002, and though there is some evidence of the AV still present, I have not had any "flare ups" since then. The large vessles seemed to react well to the sclerotherapy (performed at Bostons' Children's hospital by Dr Burrows) . Reading these posts about these children/young adults brings back so much of what I went through growing up. I hope I can offer some hope for you and/or your children, and the prognosis of living with an AV. You are so fortunate to have access to much superior technology and online forums like this to get and share information!! We did not know WHAT the "cyst" or "lump" on my chest was until later in my adolescence when the technology allowed for more detailed imaging of the area. My parents sought wonderful advice from Dr Lewis at Boston's Children's hospital during my early childhood, and I was monitored 2x a year to keep an eye on it. Thankfully, they did not listen to the advice of some doctors who wanted to put me under the knife early on...as many of you already know, VM's often find another "spot" to come back if removed invasively. We just sort of waited it out, and monitered it. At times, it grew as large as a softball, other times it would lay dormant for months/ even years.
I was extremely active/athletic throughout childhood and a college athlete. My AV definitely reacted at times if overworked (lifting weights, push ups, etc) or when bumped. This would result in swelling of the area, and discomfort. The theory was that since it was wedged in between the chest muscle and the skin, the overuse of those muscles would cause inflamation. However, my VM seemed to be "charged" hormonally, as I entered puberty, definitely had a change in it's size and tenderness. Also seemed to be tied into my monthly cycle, but that may have been due to the location. At its' worst, the VM became quite enlarged and engorged in my r breast at age 28. This is approx when I sought treatment with Dr Burrows. After so many years of mystery and not knowing how to deal with this, the solution was so simple! The sclerotherapy was non-invasive, and I would say it removed more than 80% of the issue. The actual procedure was a day surgery, done with local anathesia (I think). The recovery was minimal, and as someone previously mentioned, I did not even fill the pain prescription given to me. I still have some lumps, and tenderness occassionally in the area, but I got through 2 pregnancies with minimal problems (general tenderness and some swelling). This was a BIG mystery for all of us...did not know HOW the VM was going to react to all of those pregnancy hormones. Turned out just fine! Any discomfort I felt was soooo minimal compared to previous "flare ups". Sometimes I feel the sensation of it still being there...I can still see some of the blue-ish veins under the skin, but I am fortunate to have even skin tone and pretty thick skin over the area. It really cannot be noticed, unless pointed out.
I still have many questions left unanswered myself, so I find these forums helpful. As I mentioned above, I ALSO have a congenital hemangeaoma on my left cheek. It was its worst at approx age 1.5 /2yrs (size of a baseball), but resolved itself and never became inflamed again. There are small bluish vessels under the skin visable to only the most discearning eye, and the left cheek appears slightly larger than the right, but again, only noticable when I point it out to someone. I've had tenderness in that area as well, but thankfully, no complications. I have chosen not to have any removal/treatment to the area, and got through covering the area with makeup, when needed. As I age, I'm noticing a slight "slope, to that side of my face, but I consider it just part of who I am/part of aging in general.
I would be happy to speak offline with anyone who has concerns/questions about either of my disorders. I still have many unanswered questions myself. There is so much "wait and see" with this type of diagnosis. I especially feel for the children teens/young adults who are living with this. It can feel quite alienating. I'd be happy to share my stories/photos with those who are struggling with similar issues. feel free to contact me directly at s_mccole@yahoo.com. Good luck! Hang in there...
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  #14  
Old 09-29-2010, 04:17 AM
SL SL is offline
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Join Date: Sep 2010
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Smile VM in your Daughter's leg.

Hi,
My daughter is 11 and has had a VM in her right leg since birth. She has had 3 sclerosing procedures at Swedish Medical Center, Denver, CO. Her success has been very good with little to no growth in the VM, visually from outside, till now. She has always worn custom compression stocking on her right leg, from around 2 years of age. Now she fits into smallest made ones over the counter. These have worked. I noticed recently that the vein has grown a little on the outside of her leg, and my feeling is that the reason is that she has not been wearing the stocking for a while. We will go back to wearing the stocking more now due to this. Feel free to chat about this any time. Regards, Sylvia

Email me anytime at famcsn@telus.net

Last edited by SL : 09-29-2010 at 04:20 AM. Reason: forgot to add-
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  #15  
Old 09-30-2010, 01:52 PM
nickbar nickbar is offline
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SL,

Is your daughter swimming on a regular basis? This is very good for pain. In a pool for 30 x 3 or 4 days per week. No hot tubs, hot baths.
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