First Timer

My little girl (6 yrs old) is set to have her first Embolization on 11/23 (re-sceduled from August after she came down with a really bad viral infection) I am super nervous. Can anyone who has gone thru this procedure or have had a child go thru it give me some advice on what kinds of questions to ask before & after the procedure? What should I expect? How can I keep my child comfortable? Scarring? Any comments would really be appreciated. Thanks

My daughter was 5 when she had her embolization. The best advice I can give is to get a second opinion from a neurosurgeon (if it’s cerebral) and another IR. In our case we were not told that she may have an embo, they took her in to do an angiogram and asked us as they were wheeling her in if we wanted the embolization. I was in shock still and I agreed to anything the doctors wanted. At the time we spoke with the Interventional Radiologist and he was very pro embolization to treat AVMs (of course). After the embo my daughter had partial facial paralysis for a few terrifying days and she began acting strangely. We met with the neurosurgeon who explained to us that the angiogram had found multiple AVMs and that my daughter would need gamma since they were inoperable. The AVM that was treated with embo would still need gamma since it was only partially obliterated with the embolization. My neuro was unimpressed with embolizations for treating AVMs and told me the procedure was unnecessary. I feel that my daughter hasn’t been the same since that procedure and I wish I had not done it.

That is my story however. There are many people who have used embolizations and have been happy with the results. In your daughters case it may be the best thing but there have been some stories on here where IR drs have pushed patients into this procedure without speaking to specialists in the area needing treatment.

If you do decide to proceed with the embo, I’m told that onyx is the gold standard. I did research that and onyx seems to be more stable and better for treating AVMs.

As for your daughter’s condition afterwards, it is good because there isn’t much discomfort. My daughter didn’t experience any pain.

Thanks for the reply. I hope that all is well with your daughter. My daughter is 6 and her AVM is on her left hip/thigh/stomach area. As for the doctor, this is the third doctor I have seen since she was born and the first one that decided on an MRI. He is a pediatric specialist. He is very nice and has actually sat and explained and answered a lot of my questions, but I must admit I sometimes do ask myself if I should look for another doctor for a second opinion or if I am making the right choice. The issue is the wait time, my daughter was not officially “diagnosed” with an AVM up until about 2 years ago when I finally found Dr. Rosen. I was also told that she needs an angiogram aside from the embo and that she may need more than one procedure. The AVM is growing as she grows and becoming more visible, and I worry that if I wait, then it will be worse for her. She is set for 11/23. I am glad I found this site and that I have met ppl like you who have actually been really helpful with your kind words. Thanks again for your reply. God bless.