Hi, we live in Sydney Australia and I want to make sure that we get the best treatment for our 14 year old daughter who has a foot avm. There seems to be no other surgeons for 2nd opinions. Has anyone any contacts in Australia or has anyone travelled abroad for treatment? thanks guys
Hi I'm from Perth, and I have a facial AVM that was eventually removed by Dr Suen in America. He only does head and neck surgeries but I did consult a few specialists in Melbourne and also Dr Yakes in Colorado which I could give your their contacts if you like? You can add me as friend and I can message you the details :)
Hi, I am in the same position with my 14 year old son with an AVM in his leg. We are from Kalgoorlie, WA. The specialist from Perth who diagnosed him in July 2014 is going to talk to a dr in Germany for advise. We are yet to hear back about that. You are welcome to contact me if you wish, even if we can just exchange thoughts, experiences, new info. It seems like the end result will be a visit overseas, but for now we are just waiting while his AVM is still managable. My email address is ■■■■■■■■■■■■■■■■■■■■■■■■■.
Hi Rich that s interesting. Was he born with the birth mark on his foot?? My daughter has only had pain for about 3 months. She has had it embolised and we re looking to do another one soon. It seems as if that s common!! It must be tricky for you in Kalgorlie. I ve done a bit of research on best drs etc here and overseas. The prob is that it will be so expensive. I m not sure how bad your sons one is. I think a lot depends on whether you were born with it or not. Apparently if they noticed at birth there was a blue mark on your foot it means it is genetic I think. Our daughter trod on something and that seemed to traumatise the foot. Also this is the worst time as they are hormonal so the blood flow changes., particularly with girls. I d love to chat with you on the phone so I ll email you my number. Speaking to others is so important. We have already chatted to people in the Us from this website. ITs been really helpful, although a bit hairy at times. Just remember each person is different and you only hear the bad things!! No one writes in to say they ve improved!!!!! Cheers Deb
My 14 year old daughter saw Dr Hayward and Dr Lord at Westmead Childrens, both who diagnosed the AVM in her left thigh hamstring. They have been good to deal with.
Previously it had been misdiagnosed even after bleeding internally.
It was removed but appears to have quickly returned. Twice now.
We live in Newcastle. My daughter is suffering particularly as the hormonal changes seem to make the pain worse. She is a basketball player and still tears up and down the court - but she is in pain.
Happy to catch up on the phone one day, and I'm always keen to know what overseas options there may be to help her get rid of this pain.
I think you can friend me although I haven't tried that, not sure how it works.
Cheers, Bronte's mum.