Update with Diagnosis

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.


Sounds like a wonderful and successful trip! It was great that the entire team was there to take a look as you will more than likely work with many of them at some point. I’ve heard of Dr. Dubois from my docs office. (And of course I like my docs, which means I feel confident that Dr. Dubois must be good too!!!) :slight_smile:
Can I ask why she felt it was better not to treat and leave it alone to grow? Is the hope that it “won’t” grow at all anyways? I’m not second guessing her at all, as she is obviously 1000 x’s more qualified than me. I just always find it stange that anyone would say “leave it to get bigger and then we will fix.” I always want to fix it now while it is small!
I’m very glad that you now have the peace of mind, the confidence in a doc, and feel good about what to do when needed. That in and of itself is something that everyone faced with a VM/AVM needs!!!

Hi Shalon,

Great to hear from you. Hope you are feeling better after the last treatment. Dr Dubois feels that swelling and deformity of a foot is not considered being symptomatic unless it is excessive and impedes mobility. Essentially they do not want to start treatment on a pain free 3yr old child that has full mobility. I completely understand this and mostly agree.

Dr. Dubois also said that VMs for the most part are stable and will not spread or expand unless injured, affected by hormones, or possibly during excessive growth spurts. Alyssa, had a very unusual growth spurt just before her swelling started which seems to agree with this theory. She grew 5 inches in a period of a few months which was very unusual. She is not even 4 years old and she looks like she is 6 or 7.

Dr. Dubois expects treatment to start at or near puberty. Of course if her foot malformation continues to grow we will push for treatment.

I’ll send you a post on your page on my recent thoughts concerning Dr. Yakes.

Take Care,


I was diagnosed at 8. She’s so big! She’s beautiful. You’re in my thoughts and prayers that she’s got a much easier go of it than I did. :slight_smile: Technology has really caught up with us, and now that it has, I’m a bit scared of it to be honest!