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.
Julie
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
@LoulouYorkshire May I ask what UK team you have been under? I have a high-flow pelvic AVM around my bladder and vagine, likely congenital and I’m under the Royal Free Hospital team in London. I have not been impressed at all so far though as they are AVM specialists and completely missed my AVM. They’re very casual about the procedure even though other IRs have told me it’s complicated and might not be treatable.
Hi Loulou
Nice to hear from you again. Is this a second AVM? I have been under many and various at St Mary’s hospital Paddington -so Imperial College vascular Dept. I have only ever had
monitoring ( MRIs etc ) which has tracked its growth over the last 24 years . And great support with the delivery of my first child who was delivered at St Mary’s. The AVM is massive now but on the whole doesn’t interfere with most things I do. I have to work around it. Dress around it as the bump is now visible. I have had a few bleeds (internal bruising). I think it is getting more problematic though. I had a scan around 6 weeks ago and my consultation is with Mr Bicknell who I have seen before. My last consultation was with Prof Nigel Standfield - although on looking up how to spell his name correctly I have just seen that sadly he passed away in 2021. I had always been told that it was inoperable but he suggested that it was something he would be able to do and had done. As I was on my first year recovering from breast cancer when I saw him in 2019 I said I just wanted to leave it be for now. Plus it sounded a bit scary. It has only ever ulcerated once which was extremely painful and because of its location ( lower back/buttock) made sitting difficult. It does cause pain and pressure from time. I am not sure if living with it is something I will have a choice about moving forward. But seems like the person who could have done it is longer with us so maybe there is no choice. I wish you well and suggest you do get another opinion if you are unhappy. Take care.