Hello. I have just joined the AVM survivors and so am very new to this site. I have joined to try to speak to fellow sufferers to share their experiences. My daughter is 12 and has an AVM in her right thumb and despite is being removed surgically twice is now growing back at an extremely fast rate and is now also presenting itself lower down her hand. She has always experienced various levels of pain which we managed with over the counter medication however the last 2 months the pain has been increasing and is now constant with the normal medication not working at all. The compression glove is not making any difference either, in fact it seems to make it worse. Three weeks ago Grace started to get sores appear on her hand and they have now developed into open sores which we cannot seem to heal. We saw the Consultant at Great Ormond Street this week as the pain was too unbearable and She has given Grace Tramadol to help. We are now waiting for Grace to have another Arteriogram and based on the results it looks at though they may attempt another embolisation. The last embolisation attempt failed. What makes this even harder for Grace is that the AVM is in her right hand which is her writing hand and this is having a huge impact on her at school. We are just looking for a bit of hope and support really from anyone else out there. Thank You.
Hi Rolphie77. So sorry to hear about your daughter having such a difficult time.
I have had two embolisations in my right forearm (avm is in the elbow and travels into my forearm) as a result I suffered nerve damage and due to the Onyx I can no longer rotate my hand/arm and I have to wear a hand split now.
I struggle with most tasks, so I know how your daughter feels.
Can I ask why they removed it in the first place?? From research it’s an absolute no no to remove avms due to the risk of regrowth.
Thank you for your post. They removed it the first time with a view to it possibly coming back in later years. However less than a year later it had grown back. They tried an embolisation at this point but they aborted it as they couldn’t get to the exact point they needed to get to without causing more harm than good. They then decided to do a second surgical removal. Again however within 3 months we knew it was coming back again. We were guided by the Consultant and assumed that removal was the only option available as we had no-one else to whom we could talk to about it at the time to compare. It has now been two years since Grace’s last surgery and the AVM is now bigger and more painful than ever before. The embolisation should be taking place in Three weeks time however I am not sure that this is the right thing to do as I do not feel that we have been given enough information about it, especially now having read the various postings on here.
You may want to contact Dr. Wayne Yakes at the Swedish Medical Center in Englewood, CO. He's one of the more knowledgeable/experienced specialist in AVM. He is well respected in this field. He may be able to help your daughter. I know a lot of others who have been treated by him from the Facebook group AVM Malformation Awareness. I have been treated by him as well. I stoped, because my AVM was too huge and I 40 yrs old then. You may want to join. AVM will continue to grow if it is not completely removed. It's also possible to emboize the entire AVM in time, if it's not too large. Embolization kills all the cells in the vein treated which prevents it from growing back. I think this is your best bet to save your daughter's hand. However, I'm not a doctor. I'm speaking from my own personal experience.
Don't give up. Your daughter can have a full happy life regardless of how this works out. I've sent pictures of mine, to assure you if I can have an amazing life, your daughter can as well.
Thank you Linda for your reply. I will definitely join the Awareness Group on Facebook. I am so pleased that I have joined this site too. I already feel that we are not alone and that we wifi be able to take a lot of positive thoughts from the people here!
Our daughter is having first surgery tomorrow with Dr.Yakes & I agree that a consultation with him sounds like a great idea for Rolphie77’s daughter.
Hi Rolphie77 it makes me so sad to read your message. I still feel all the anguish and futility that having a child with an AVM brings. It is heartbreaking. My daughter was almost 12 when she was diagnosed with AVM's in her ankle and at her knee. She is in pain 99% of the time and also has terrible ulcerations around her foot and ankle which do not heal. We too were seeing consultants at Gt Ormond Street and she had 2 embolisations there. I hear what everyone is saying about Wayne Yakes, he is meant to be the best AVM doctor there is but he is in Colorado and it is so expensive to travel for treatment from the UK. We are now seeing a dr at The Royal Free Hospital in Hampstead who has been mentored by Dr Yakes. This is very recent and Mia has already had one embolisation in February. There is no noticeable improvement. She is due to have a further embolisation in the near future. We are still looking for hope and praying that someone some time will have a solution for this condition. Thinking of you and Grace xx
Hi! My daughter is also 12 and has two avms, one on each hand and forearm. The right hand one is huge. Hers have grown rapidly due to puberty hormones so I guess that it may be the same for your daughter. We have also been referred to GOSH so it would be good to hear about your experience there. I would very much like to stay in touch for mutual support. It’s a very isolating and worrying experience