It is your right to obtain further medical opinions. These are best provided by physicians familiar with vascular malformations. Your physician or one of the patient advocacy sites can provide you with names of experts close to where you live. If you are seeking a second opinion, it will be important to bring all pertinent consultant notes, laboratory studies, radiology reports as well as copies of the radiologic studies (often available on a CD), and pathology slides (if relevant). Jot down your specific questions in advance to make the best use of your time.
Do not be surprised if different physicians recommend divergent interventions. There are many gray areas, and physicians will gravitate toward their expertise and experience.
When our son was born with a large RICH on his but-tocks, the pediatric surgeon at the hospital didn’t know what it was or what to do about it. He told us, “They are going to tell you that is a hemangioma, but they will be wrong.” As it turned out, it was a hemangioma, and thankfully we were able to find doctors who knew what to do about it. If time is available, get a second opinion.