Vascular Birthmarks Foundation Forum - View Single Post - very depressed, the complications have arrived.
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Old 01-04-2012, 07:46 PM
abatie abatie is offline
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Join Date: Oct 2009
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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.
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