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 email@example.com
. Good luck! Hang in there...