I’ve been in contact with a Vascular Malformation specialist at St Justine Hospital in Montreal (Sick Kids) (Dr. Josee Dubois) and after convincing our family doctor to write a referral we called Montreal to make an appointment. Surprisingly, they offered a date of Oct 10th which was only 1 week away!! So we accepted and made the 8 hour trip with the whole family including grandparents. The hospital was wonderful and very efficient. Alyssa’s appointment was labeled a “consult” and this meant that every specialist available would look at her at the same time. So during her appointment an entire team of specialists (Vascular Surgeon, Interventional Radiologist, Plastic Surgeon, Dermatologist…etc) all took a close look at Alyssa’s suspected AVM in her foot. The room was full of white coats!!!
Remember, it was not diagnosed yet. I personally suspected that it was an AVM (not a VM) due to the fact that the swelling on her foot was sometimes warmer than the other normal foot. This told me that a more than normal amount of arterial blood was being pumped into the affected area.
So the entire team of Doctors take a look and suspect that it is a Venous malformation and not AVM. I tell them about the warmth and they say that the vascular ultrasound will confirm if it is VM or AVM. So we go for the ultrasound and during the ultrasound the technician actually verbally updates me on everything she finds (never get that in Ontario). She says she can only find one small artery possibly communicating with the malformation and that the rest of the malformation is slow flow (Venous).
So we go back to Dr. Dubois and she says it is confirmed to be a VM and not an AVM. I’m not sure what to think about that as the technician had found one small artery. Anyways, because Alyssa is so young and not in pain, the swelling and deformity are not enough to warrant treatment. So we have to wait and watch until the VM either grows more, or she becomes symptomatic, and then treatment will begin with foam sclerotherapy (STS). We were warned never to allow anyone to treat with glue, particles, or excision. We can call the hospital at any time and talk with Dr. Dubois or bring Alyssa in if things change. This is great peace of mind not having to search for help any more. But we still have to sit at home and watch this thing grow.
Cheers,
GREG
