Update After Alcohol Embolization

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.

Thanks for the updates You sound like a very intelligent person and a good advocate for your child. Dr. Yakes does have alot of experience and several of our members have received treatment there.I hope you see much improvements as time goes on but the process is never easy. Not for the patient and not for the families.

Sounds like you have the best treatment plan ! So sorry the treatments are so difficult on her. I am dreaming of the day to hear my son’s a man is cured! God bless and keep us posted

Glad to hear your daughter is getting help from Dr. Yakes. My son Gabriel, 3 (massive left facial venous malformation), is heading for his 6th procedure with Dr. Yakes on the 24th of this month. I in no way can say this is how it is for everyone, but for Gabriel the first two times he had REALLY bad swelling and he also had bad bruising (the first time). The treatments after this, with the exception of this last one, his swelling was much less and as far as brusing, well he doesnt really bruise anymore. The last treatment he had he swelled quite a bit but it didnt seem to bother him at all. Best of luck to you, and if you have any questions feel free to message me! Maybe our paths will cross one day :) God Bless!