AVM Survivors Network

Extremity AVM treatment options in uk?

Hi all. Had another MRI scan yesterday and want to be as well informed as possible when I have my next consultation to review the results and options (including ‘do nothing’) · Does anyone have an understanding of where the best expertise are for
Extremity Avms in the UK? What have been your experiences in the uk and could you recommend anyone? Such a rare thing it is hard to know where to look let alone compare.

Hope you are all doing well.

My experiences for 3 sub dura spinal AVM's were at Royal London Hospital at Whitechapel, Consultant Neuroradiologists Dr Ken Wong and Dr Lavan Makalanda, both excellent. Also Dr Nick Plowman, consultant Oncologist at Bart's for the Cyberknife radiotherapy of the 2 inaccessible AVM's (although this wasn't done on NHS).
Those mentioned above have experience with AVM's and might offer you some opinion. Good luck!

Hi Julie. I have an AVM of the Cerebellum which I have known about since my teens (I am 41 now). Fortunately I am one of the lucky ones and my AVM hasn't yet given me too many problems. It is unruptured and I am able to live life as 'normal' although I am always aware of its presence. Treatment for my AVM would be risky and therefore I have chosen to 'do nothing'. For me this seems the best course of action at present. My AVM caused a secondary condition when I was 14 and I had an operation to insert a Shunt which has since been revised 3 times. I am treated at John Radcliffe in Oxford and find them to be very good. But I haven't had treatment elsewhere so have nothing really to compare them with. I'm not entirely sure what you mean by 'extremity AVMs'. But I understand that Sheffield is an acknowledged centre of expertise in AVMs. Your local hospital should be able to tell you more I think. Best of luck.

Hi Julie
I have heard of 2 doctors at the Royal Free Hospital in Hampstead, London who are supposed to be experts in AVM's. My 13 year old daughter has AVM's in her right leg and is currently under a team at Great Ormond Street Hospital but when she comes of age, apparently the Royal Free will be her 'adult' hospital. Wishing you all the best of luck. Do keep us posted x

Hi Julie I wish you well in finding the correct treatment for your avm. Mine is different, it’s in my face and high flow. Dealing with the NHS has been very slow and totally inadequate and I have been left badly scarred from the last embo with many additional problems. I found it impossible to be referred. I’m off to the states to see dr Suen next week for treatment of the avm and plastic surgery. I was told here that they could do no more treatment on the avm. I’m hoping for some success over there but the cost is huge, six figures and I will need to go back I imagine a few times. So I wish you luck with your treatment and try and push for referral, I thought my team were experienced with AVM’s but it turns out they weren’t and I’ve paid a very heavy price for the 2 years I’ve been under them. Very good luck and wishing you well. Louise