Hi, I m new to the forum so I dont really know what I m doing! We live in Sydney, Australia and our 14 year old daughter has just had her first foot embolisation. The surgeon seems good and we re confident but I just wanted to hear from other parents to see what their experiences have been. Do you normally have several embolisations? Is it better to have excision surgery? Any other ozzies out there?? Thanks everyone. Dont feel quite so alone now!!
Hi! My AVM is in my right thigh, and in my case, I’ve had two embolizations so far, and I’ll be having my third embo this coming Tuesday. I think it all depends on the size of the AVM, whether it’s feeding into any other body parts (for example, mine is feeding into my knee, which is why I’m having a third one), and how much of it they were able to dissolve during your daughter’s embolization. I’m not sure what the excision surgery is, so I can’t answer that. I’m sure you’ll find out more at your daughter’s follow up appointment. Is your daughter doing okay after the embolization? Welcome, by the way.
Hi Clarinetgal. Thanks so much for my first reply! I m so excited by this forum. Finally someone might be able to answer some of my questions! My daughter s ok but to be honest I dont think there s a huge improvement and it seems as if she ll have to have other surgeries. Reading some of the comments this seems quite common? How long have you had your avm? have you had a big improvement? It s so tricky as no one here seems to have heard of avms and there are virtually no surgeons who will operate on my daughter. Where do you live? We re in Sydney. Thanks sosooooooo much for the answers. i feel less alone already!
I have rt. leg and foot avm’s (massive) my doctors state it is to dangerous for them to do anything… I would appreciate you keeping us updated on your daughter…Thanks oh and I enjoy this group everyone been so kind
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My daughter also had a VM in her left foot. She had 3 excisional surgeries (between the ages of 4 and 7), none were effective. She had those surgeries before we actually knew that it was a VM. Once we knew that it was a VM, I researched and found Dr. Yakes in Denver (LOVE HIM). We are located on the east coast of the US, but decided to pursue him. My daughter and I traveled to Denver I think 8 times for a total of 11 embolizations. She's been VM free for 2 1/2 years now and she has even run 2 8ks! She just had an MRI in December that Dr. Yakes still says looks good. We'll continue to do yearly MRIs to keep an eye on it, but praying we're at the end. She recently had foot pain again for a couple of weeks - hard to know if it's growing pains (she's 11 now)or if the VM has grown again. We just keep praying and doing the follow up MRIs.
Best wishes!
hi Munchkin,
i live near Brisbane and I have a right foot avm and a left foot avm. The right foot is worse than the left foot so the dr is leaving it alone at the moment. Have just had a checkup on the right foot and he said to just keep going as long as I can and then he might get some embolisations on it with the Interventional radiologist who has done some on me previously. I get avms everywhere as I have Cowdens Syndrome. I previously had an avm successfully removed from my right elbow but the ones in my right foot are too diffuse. If your daughter's avm is in one spot and has not spread out then it may be able to be removed.The Dr I see is at the Wesley Hospital in Brisbane and is a Vascular Surgeon. He is actually the Chairperson of the Vascular Surgeon's Society so he is up to date with any new procedures. The Interventional Radiologist is also at Wesley and is also very up to date with procedures.
Hope this helps
Lesley
Hi! I’ve known about my AVM since May of 2014. I’ve had two embos, so far. I didn’t see much improvement with the first one, but I am starting to see some improvements after my second embolization (I just had it Jan. 6). I live in Washington State, USA.
Thanks Lesley, would you recommend him? We really need to get the best treatment early on it seems and we will do anything for this. If it means going overseas that s what we ll do but dont want to rush in too quickly. Do you know if the ozzie drs are as good as the US ones? Thanks
Hi thanks for replying. THis comment is the first positive one I ve read I think and it makes me feel that there is hope and that we may be able to at least help her improve. I m getting hold of her medical records this week and so then I can hopefully send them to the US and get their opinions. So were you born with Avms or have they just developed? Do you know if they spread? Thanks Deb
Hi! Good luck on finding the best doctors for your daughter. To answer your questions, from what I’ve been told, my AVM is congenital. It stayed quiet until my pregnancies, when it flared up again. It quieted down for awhile, but something happened last year to cause it to flare up again, and it hasn’t started to quiet down until after my embolization on Jan. 6. I think they can either spread or feed into other spots, because at my last embo, the surgeon discovered that some of the vessels from my AVM (it sits on one of the arteries in my hamstring) are feeding into my right knee, which is why I’m having another embo on Tuesday. I hope your daughter’s AVM is contained. Good luck to you!
I think that they are good but them I am biased as the surgeon saved my arm from being amputated.I don't know about the Sydney ones but if you read my private message you will see that the surgeon I go to is one of the best in Oz. With my condition being genetic there is really nothing I can do except get them looked at when they surface.
My son is 9 and has a left foot AVM which we are still battling. He has had 3 embolisations and 2 attempts at excision surgery which have not worked. We are back to Melbourne in march for review but I will not subject him to more open surgery. We are also on the hunt for any doctors in Australia that may be able to help.
Sorry this is such a late reply!
My AVM was discovered when I was 7 and we didn’t get any treatment done until I was 14. My first embolization in 2014 seemed to have gone well (3 platinum coils, swelling gone down, etc.) However, a week later, the discoloration returned to my heel and the swelling came back as if nothing had been done! I’m getting my next embolization this year. Hopefully it goes well and I can finally wear cute shoes!!!
EmmaMargret
Welcome to the site!
Please join the @Extremity AVM group and I hope some members of the extremity group can share their experience with you. You’ve replied to a very old conversation thread, so it is possible that people reply but we moved “platform” last year and not everyone who is a member here is actively using the site, given the different style of threads and posts, etc.
Feel free to create your own topic, using the New Topic button, for example in the New Members category or Extremity category or General… etc., wherever feels most appropriate.
I’m sorry to know your first embolisation didn’t sort you out, though my reading of posts on the site is that extremity AVMs seem especially difficult to fix permanently.
Let us know how we can help you. Feel free to start your own topic.
Very best wishes,
Richard
Thanks for reaching out. I’m finding the site really hard to navigate. I’m looking for doctors other than dr Yakes to treat my extremity AVM.