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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Hi @aimsie639 how are you? I hope you’re good & well.
I had my 5th bleomycin sclerotherapy injection on Tuesday on my eye.
The Dr who I’m under said to me they’ll continue treating my AVM with bleomycin until they have reached the maximum dosage.
I think in the near future they’ll be using STS to treat my AVM on my eye.
Dr did say they rarely use STS around the face.
I was just wondering how many injections did it take for you to notice the difference when your AVM started getting treated with STS & also how did you feel when you woke up in the recovery room?
Thank you
Hi!
For my AVM, they’ve been treating it with a combination of STS and bleomycin. I’m not sure the reasoning behind it, but it could have been because of the size. I’m not sure if there’s differences depending where you are, but I can have up to 400units of bleomycin, and then I’ll have to hope someone invents a new treatment option I can use. I had two treatments, and then on the third they decided against treating it because it was close to being “too small” to treat it. Even with just the two treatments, I was able to use my arm again with significantly less pain. I also wasn’t put asleep for my treatments, they left me awake (without any type of sedation) as they needed me to move my hand throughout the treatment so they knew they weren’t destroying the nerve plexus beside my AVM. Although I wish they did because a 5 inch needle poking out of your shoulder is not easy to stay calm beside!
Hope you are doing well!
Check your inbox @aimsie639 I’ve sent you 2 pics of my AVM.