Dear all,
I paralysed when I was 14, a spinal AVM has ruptured. I recovered partially, all my life I could walk only help by a walker and on short distances. In 2012 I had a new rupture and my leg spasticity aggravated a lot. I could barely walk. I had the AVM embolised at Zurich by prof. Valavanis. It was huge and complicated but successful. Professor told me I could make children and have no worries. I made a child when I was 40, everything went well, I thought this is a finished matter. I could not walk anymore, nevertheless. Lately the spasticity got so much worse, as it was after the rupture. I am afraid not to have another AVM. IS IT EVEN POSSIBLE? To develop another AVM after 13 years after the embolisation? I am waiting to do an MRI, it is true that I have not done one in the last 10 years. But I am incredibly worried and I have the worst thoughts, being afraid for my child not to remain alone. Has anybody had this type of situation? I started to worry about this while investigating a hemangiom I had since I was a child on my eye lid. That now seems more swollen. Wondering how many AVM may be hidden… Thank you!
Hallo there I made after AVM, Gamma knife treatment and after 1 year complete Angiogram check up of my brain.Too painfull but after this checkup my neurosurgon told my AVM gone.
It is certainly possible for very few of us to have multiple AVMs. I guess that having a hemangioma as well as a spinal AVM is an indication that you may have more than one, so therefore it would seem sensible to check for others.
There is one condition that brings multiple AVMs with it, called HHT. There may be other, even rarer conditions that bring multiple AVMs: I’m not aware of these but it seems sensible to ask the doctor about HHT and otherwise about the possibility of having multiple AVMs. If it is HHT, then it would also be sensible to get your son or daughter checked as well.
So let us know how you get on because there are others here in a similar situation and you can all help each other by sharing what you learn.
Very best wishes,
Richard
Hello Elena,
AVMs can grow back if there is even a tiny bit that survives the treatment. That happened to me. My AVM was first embolized nearly ten years ago, and then Cyber Knife radiation was supposed to get the rest. It didn’t work, though, when I finally was checked to see if the radiation had worked, it turned out that it hadn’t. The little bit of the AVM that survived recruited new blood vessels and grew back to the size it was before. So I had it embolized again, and chances are I’ll have to have it done again eventually. No more radiation, though.
I’m being monitored with MRI/MRA every six months now.