My AVM/eye is being treated with bleomycin sclerotherapy 
September 2019 (1st injection)
January 2020 (2nd injection)
I had my 3rd injection on the 30th January.
Has anybody else had sclerotherapy before?
Hi! I have an AVM in my clavical / shoulder area and I get bleomycin and STS foam to treat it! I find it’s hard to find people who get this treatment too!
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@aimsie639 Hi, how are you? I hope you’re good & well.
How many injections did it take for you to notice the difference?
I’ve only had 3 so far & my AVM on my eye is still the same (at the moment)
Hi! I hope you’re doing well too! :).
It took me two injections before I noticed it was better. I assume it would have been better after the first but by the time it was starting to heal I got the next injection.
My AVM is very entwined with nerves as well as a nerve plexus so I lost some function and feeling of my hand and arm. After healing from the second injection, I noticed quite a big difference! After both injections it took 2 weeks before I could even move my arm plus an additional 4 weeks before I could move it without it hurting.
My last treatment was 6-7 months ago but I’ve already noticed some pain and decreased function in my arm again so I will try schedule an MRI in a couple months to see if it is growing again (which I have a sneaking suspicion that it is).
Hopefully that can provide some insight, I’m still a bit confused about the whole process of how it grows back, and everyone seems to have different treatment plans. This is the only treatment that will work for my AVM, it is inoperable and won’t respond to other medications. Just hoping they can figure something out before I hit the maximum bleo that a person can have.
Best wishes!
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