Hi, I am still very confused about what really to expect. I had a brief email exchange with the dermatologist and here is what she says: "Your daughter's growth showed a rare, benign growth that is composed to sweat gland cells and vascular cells.
This histopathologic observation is not an indication that she has AVMs elsewhere in her body. For the sake of completeness, I can do a thorough, full skin exam on her to make sure that there are no other cutaneous signs of vascular growths."
I have so many questions but very few answers. Is the fact that she had this AVM (assuming it does not come back) an indication that she may develop AVM somewhere else in the future? Is a thorough observation of the skin enough to establish that she does not have any other AVMs? How do you keep an eye on this, what kind of routine test/s you do to find out if indeed other AVMs may have formed? Can we expect the worse may come in her adolescence, since AVM growth seems also to be related to hormonal changes? I am sorry for all these questions!


Never feel badly about asking questions here. Ask away.

I can't speak to the extremity AVMs, but in general, you will want an AVM specialist to assess the AVM(s). Fine if the dermatologist wants to check. But unless the dermatology also works extensively with AVMS, move on up to an AVM specialist.

Hope this helps.
Ron, KS

These are smart questions, billifab, and I will try to address them one by one.

First, "benign" has the narrow medical meaning of non-cancerous; from a layperson's perspective, AVMs are not benign, as they can cause pain,loss of function, bleeding, and other problems.

Second, I am sure you could examine your daughter's skin as well as the dermatologist, as the cutaneous signs of AVMs are fairly obvious if you know what you are looking for. Birthmarks can be suspect, especially if they are reddish or purplish, as are any swellings or cyst-like growths. A red blush on an area of skin could be an indicator (you can check my son's photos). AVMs are highly individual -- a person may have one AVM the size of a gumball, or an AVM may involve a whole leg. AVMs are not restricted to cutaneous areas, but can be found in the spine, in the brain, in the stomach, or almost anywhere else you can think of. A skin check cannot rule out AVMs.

For most of us, there is and will be only one AVM to worry about. However, there are several rare genetic conditions -- HHT, neurofibromatosis, Sturge-Weber syndrome, CM/AVM Syndrome, Cowden Syndrome -- that can predispose people to have multiple AVMs. Full body screening is generally not indicated unless there is evidence of more than one AVM in the immediate family or a family history of one of these disorders.

There is a reason not to get too enthusiastic about screening. Most AVMs never become clinically significant or cause symptoms. Treatment may actually "activate" an AVM and cause it to progress, so treatment is not always warranted if an AVM is causing no trouble. Brain AVMs, for instance, are far more likely to recur if they are treated during childhood. Also, the treatments themselves may sometimes cause harm. So, it's not a simple question of screen and be safe, or don't screen and be sorry. On the other hand, not treating a progressing or symptomatic AVM can be dangerous. There are just no easy answers with AVMs.

Yes, adolescence can be a trigger for the AVM to grow and progress, as can pregnancy. Oral contraceptives and hormone replacement therapy are also contraindicated. Sometimes AVMs progress significantly before adolescence, and sometimes they do not manifest until adulthood. Sometimes there is a specific trauma that starts the progression.

Keep asking questions, and keep reading the articles posted on the Extremities group.

Thank you I really appreciate your reply. My biggest concern now is that probably it would have been better to leave that purplish bubbling little thing she had on her harm alone, and I am worry that the surgery may trigger something worse.

Having the biopsy is better than having the AVM quietly progress without knowing the diagnosis. If you get to an expert in vascular anomalies, they will be able to evaluate what should be done next based on the size, location, and complexity of the AVM. You can also keep an eye on the AVM and report any changes to your AVM doctor.