I have a scalp AVM,left temporal,started above and behind ear. MRI scan shows 8cms lesion. Awaiting biopsy to be performed to make definitive diagnosis. My hair conceals it for now thankfully. How rare is this condition?And does anyone out there have it?
Hi Moira, I have a scalp avm, left side above my ear. I found it while washing my hair, had a pulsating mass and a whooshing sound in my ear. My left eye felt like it was being sucked into my head. Scalp avms are not very common. No matter what kind of avm u have, you want to try to find a Dr. that is knowledgable, so it is treated properly. Mine is extracranial so not connected to my brain. I did have an angiogram done so they could be sure it wasn’t connected to the brain in any way. There are a few people on the site that had a scalp avm, you should be able to search for scalp avm.
Thank you so much for your reply.
You are the first person I know of who has this condition. From what you say, your AVM must be quite small? If so, you are lucky to have had an early diagnosis.
I agree about finding the right doc. My consultant is a plastic surgeon who initially diagnosed the mass as avm from an MRI scan. A second opinion from a neurointerventionist suggested maybe a vascular tumour ( this covers a large range of benign conditions as well as malign) ; they agree that because of other factors an avm is most likely, but definitive diagnosis requires a biopsy. Which is challenging in itself.
I am researching to discover centres of excellence for vascular abnormalities in the UK to start with . Given the rarity of these conditions, finding the right expert is also a challenge.
So there it is at the moment. The treatment options are extremely varied as you know and each case is unique in that respect. Have you had any recommendations for treatment? And which country are you in,if I may ask?