Hello, Can anybody offer advice? I have a facial AVM and undergone 6 embolisations over the years, but it is getting worse. Last weeks nose bleeds were very scary and I had to go to hospital for a transfusion and kept in for 3 days. I am treated in Leeds and I like my neuro radiologist but his experience of AVM’s is limited. How do we get specialist care in the UK or indeed contact 2 specialists I keep reading about in the States? If anybody is going through the same problem, I would love to hear from you.
Hi my surgeon is at The National in London. She is an avm specialist. Hope this helps.
Hi Loulou
James Jackson interventional radiologist at the Hammersmith Hospital London (a leading UK centre for radiology, like The National Hospital in London) is very experienced. James Jackson will usually only intervene if problems and when avm settles prefers to leave it alone. I was fortunate to be able to go to the U.S where some very experienced surgeons and radiologists are 'less conservative' and tackle avms even when avm is 'acquiescent' and quiet. Hope it helps and please contact whenever you wish.
Hi, thanks for your reply. My AVM is worse since last embolisation in September, still have open ulceration on cheek disfigured quite badly and constant bleeding! also experiencing worsening migraines! now weekly and the sickness from these makes my face worse. The jury is still out as to whether these are connected. Can I ask if you were treated in the states, was it costly and how you were recommended? My neuro doesn’t want to do any more which seems to be the way over here. Thanks
Thanks for your reply. I will see what Leeds say when I next go as would very much like a second opinion, as avm not great at the mo.