Originally Posted by abatie
Although AVMs are not my area of primary interest I can relate to what you are going through as my daughter has faced many challenges in her short life. The best advice that I can give is to find a doctor who specializes in the treatment (just because someone has done it doesn't mean they are a specialist or that they should be doing it), meet with them and make sure you trust them and feel comfortable with them, and ask about what to expect and what will take place. They can give you a realistic idea of what outcome you can expect. Sometimes you will be told miracles are going to happen (be skeptical of anyone promising that!). After all of this information you may want to get a second or third opinion before you move ahead with treatment. I have been to several different doctors in several specialty areas trying to find the best fit for my daughter. I have actually learned more from the parents that also have CMTC children than any doctors I have met with. That isn't to say we haven't seen some really good doctors that we have been happy with but treating something as rare as CMTC is difficult for doctors, who in most cases, have never heard of it prior to meeting Becca.
thanks for responding Abatie. we have already been on that doctor finding rollercoaster. now he is being seen by the head of vascular anomolies at great ormond street, so i'm comfortable that we're in the right place, just going through another low and trying to come to terms with the fact that my son will have pain issues his entire life. it's the feeling of helplessness when he grabs at his sore foot, which really cuts me up. he looks at me as if to say do something.