My AVM is being treated with Bleomycin via sclerotherapy
Welcome! You are part of a great UK contingent within our community. I had to consult Dr. Google on your treatment as was new to me, really interesting. I hope it is all going well and your treatment is progressing. I was a gamma knife patient so had a lengthy waiting period. Take care, John.
The first injection was in September 2019 and the second was on the 7th January. I’ll be going back in April.
It’s great you found us! I’ve not heard of bleomycin either, though I have heard of sclerotherapy: I think it is more often used for people with an AVM in an arm or hand or leg or foot: where is your AVM? Like John, I’m a brain AVMer.
If you’re an @Extremity AVM patient, we have a decent number of extremity folk here: you’ll not be alone.
Very best wishes,
My AVM is on my eye.
Hi. It may be that you find some kinship with folk in the @Facial group, though there are fewer with a facial AVM.
How have you got on with your sclerotherapies? I get the impression from others that it is quite a tough (= really rather painful) treatment. I take my hat off to you!
It’s just going to take some time for the malformation to shrink.
Richard, I had to read your last sentence twice. I thought you said we have a number of really extreme folks here. And then I thought, “hey, is he talking about me?”
Then I read it and realized that you were talking about the condition and location, not psychological, egotistical or anyother sort of thing that “we” could do that was risky…
Have a wonderful day - or at least make it as wonderful as possible, given your current health.
Ok, so I’ve read about bleomycin sclerotherapy and it sounds different from the usual sclerotherapy used by the extremity guys but, hopefully an effective treatment for you. It sounds especially appropriate since your AVM involves your eye and I assume it discolours your skin.
It sounds just like the waiting game that John and co as gamma knife patients have to go through – to wait for it to have the effect of shrinking the vessels. Very best wishes to you, my friend, I hope it all goes the right way
TJ, I’m doing fine, thank you! I do have you and Merl as our most extreme AVMers
I’d love some of the Extremity or Facial folk to pitch in.