thank you all for your support and responses. I have not been on here for a while.
To answer some questions, I live in Canada. Calgary, Alberta actually. My present surgeon/Dr. is Dr. McPhalen. and is is one of the two specialists in Calgary.
My MRI in January was my 3rd, and i was injected with dye. I was able to see the results, and the VM is very large in my lower back. Larger than my fist and quite deep. I have a blood clot related to it as well, and it's causing me lots of pain.
We discussed me having surgery. I realize there is no 100% guarantee, but i feel i need to give it a shot. I'm having an extremely difficult time that i'm going to have to deal with this chronic pain for the rest of my life. I am in pain.
I now have another appointment to see him in a couple of weeks, because not the pain is spreading and i can see darker veins on my left hip which is very sensitive. I too have a very rare case. He's never seen or heard of one in my location before either.
I will keep up more with the posts on here now, especially since i am discussing surgery, and i am so happy to have finally met some others who can relate to me.
I feel your pain!