So not posted for a while as we have been so busy trying new treatment on my daughters AVM called bleomycin. My daughters consultant said it would really help her. Three treatments every six weeks, as we all know with the Nhs it is never on time. So some of the treatments were three months apart. The treatment was done into her AVM on her calf ( from her ankle up to knee. The pain each treatment for her was agony she even burst all the blood vessa in her eyes and cheeks she screamed so much. After a year of these treatments and no difference in her pain, we were tired of her being in pain and being messed around. We put a complaint in. In hope that someone would do something anything to take away her pain. She has gone from a very active 18/19 year old to a wheelchair and crutches 2o year old. She had to leave college and barely leaves the house because of pain.
The hospital answered our letter saying it was not a AVM but a VM, even though before each treatment and visit he would say she had a low flow AVM. Also that they do not grow any larger!!! I just want to know what the difference is and also does anyone have any ideas on how she can be treated or what pain killers will help her. She is currently on Pregablin. Thank you in advance.