"Cure"

Everybody,

My daughter has seen three neurosurgeons (two from our hometown and one at Mayo Clinic). Originally, we were told that the AVM was resected and gone forever. Mayo told us earlier this year that an angio indicated that the AVM had regrown. The neurosurgeon at Mayo said he would do a follow-up angio in 6 months, then changed his mind to 12 months.

Fast forward to today … new home neurosurgeon. Daughter has been having an unusual amount of falling/tripping and other struggles. Doctor says that since it’s been 6 months since last angio, my daughter needs a follow-up angio. I don’t care why he says she needs it. I really wanted her to have an angio so we know for sure that it’s not an AVM causing problems (because this is similar to what we experienced a year ago when we found out the original AVM had regrown).

New neurosurgeon says this angio will definitively tell us if my daughter’s AVM has been “cured,” (that was his exact word). He did proceed to say that he would do an MRI in a year, then follow-up with another one two years later, etc. (assuming things are uneventful between now and then).

I like his plan of treatment, but the “cured” discussion scares me.

We have an angio scheduled locally a week from Monday. Or we can go to Mayo this week and ask the doctors there what they think and see if by some chance they’re open to the idea of an angio. Mayo is a 4-hour drive, which is fine if it’s important and I don’t think doctors here can handle things.

Any votes out there? Hard to know who to trust and believe when it’s the health and welfare of my little girl.

– Tina

Hey Tina! I started a discussion very similar to this in the parent’s group, where I asked parents to share their surgeon’s follow up plan. They are all so different. Some surgeons declare “cured” much sooner than others, and some do very little follow-up testing. I was interested in what all of the doctors are saying to see where our surgeon falls. I want Lindsey followed for a long while, especially with all of the reports of regrowth in children that didn’t show on MRI, but did on angio. You might hop on over there and take a look.