Sorry you have been going through so much, I can really relate how you feel my problems have been so much worse since my last operation (see my thread, My story) Im in a similar place no one seems to be able to help and am always waiting for someone to get back to me, which they never do, I have 2 young children age 5 and 8 and so much want to be better so I can do more with them, my vascular malformation has completely taken over my life, It used to be a pain I could put to one side. but now it has become out of control and I fear for where I will be in 10 years time. My vm affects the right side of my back and is encroching now on my spinal area, I have headaches most of the time, a spinal fluid leak causes the headaches which the vm probably is the cause. any physical activity increases my headaches so am doing little, I was a windowdresser for 18 years which I loved to do but had to give this up because of my back & headaches, I now manage to do a desk job where I am sat down all day.
I did take legal action after my last op but really I dont have much hope these things always take forever and really I expect the only winner will be the solicitor.