Hi, Im Niamh, 32 year old female from North of Ireland, with vascular malformation on left side of my neck, and a further VM on my left jaw that developed after surgery 11 years ago. After a bad old time of it in the years following the not so successful surgery, ive finally plucked up the courage to seek possible non-invasive treatments. My neck swells at so much as a sneeze and is restrictive and painful alot of the time, and the VM on my jaw (which i didnt have until my surgery) is swollen all the time, which I am very self conscious about.
I was impressed with the recent reviews on bleomycin, but my hopes were somewhat dashed when my vascular consultant in Belfast advised me of limited success in any area of treatment. Well, ive been referred to london (dont know yet who with or when), and I was wondering are there any members in Ireland or the Uk who are in a similar situation to myself or have encountered any pioneering vascular specialists who fill them with HOPE?? I find it frustrating that seemingly nothing can be done!
If anyone would like to contact me my email address is firstname.lastname@example.org
, it would be great to share some frustration, or even better, some success stories! Also, I would love to hear from anyone who has tips on how to manage their VM in everyday life. It would be nice to bounce ideas of someone who knows what its like.