I wanted to give everyone an update on Baylie after her first AVM surgery on May 18th. I should have updated you sooner, but with it being our first experience, I was a little overwhelmed. The first 9 days, she had UNBELIEVABLE swelling; so much so that it caused her eyes to be swollen shut. We did have to have her stay overnight because her blood pressure dropped dangerously low for some reason. Once that was under control, she was released the next day.
Both eyes swelled shut for two days and the left eye for about 6 days. The swelling was so bad that she didn’t even look like our daughter. He treated 9 areas this first time. The steroids they have to give her to keep the swelling at a safe level, were really hard on her body. She got a lot of acne and put on a few pounds because they can make you extremely hungry. Good news is that two weeks after the surgery, all swelling went away.
She will need 8-10 more alcohol embolizations every 4-6 weeks. Dr. said AVM is a tangled mess and that’s the reason for so many more treatments needed. As far as the AVM looking any different…it actually looks a little worse (deep red color, very hard to the touch), but this is just the normal process as we get rid of it.
Baylie had an amazing attitude throughout the whole process, but I don’t think she’s looking forward to the next one. At least consult with doctors that use alcohol embolization before getting treatment with ONYX and the other methods. If we would have never met with him and had those other treatments…the risk of Baylie getting blinded or have a stroke were a big possibility. According to him, With his method, that is really not a concern:) AND… He believes he will completely cure her AVM.