Multiple Craniotomies

At my son’s one-year follow-up, the angiogram may have shown a residual/regrowth of his AVM. The neurosurgeon wants to operate again (third time’s a charm). How did you decide which treament was best for a repeat AVM? He’s 9, and the idea of another craniotomy scares me.

I think you have to figure the risks/benefits for each medical option, see which one the DRs recommend, then get a 2nd opinion, then do what you think is best.

Once you’ve chosen, don’t 2nd guess yourself.

Best wishes,
ron, KS

Dear Kris, it is terrible to know our children has some residual avm after a craniotomy. That happened to my son once and he had to repeat craniotomy. Your son avm can not be embolised? All the best.

Have the doctors explained why this happens? If your AVM develops in utero it should not “regrow”.

Kris,

I have an 8-year-old daughter who had an AVM that ruptured almost two years ago, then regrew earlier this year. She’s had two craniotomies. I can tell you that neurosurgeon did not hesitate to advise craniotomy for second AVM. Likewise, I wasn’t wanting to take a chance that it would rupture before we could get it repaired.

I was told my daughter will have to be closely monitored throughout her childhood for more regrowth. As much as it scares me every time she complains of a headache or anything else, we all know how critical it is to resect this before it can cause anymore damage for your son.

If you have any doubts, ask for a referral to another neurosurgeon. Just snag your records and images so you can share them with the second doctor.

Best wishes. Let us know what you decide to do.

– Tina White

Thanks for the support everyone. Max’s AVM is not a candidate for embolization. Plus, the idea of waiting 2 to 3 years to see if the embolization worked kind of scared me. Right now, my son’s case is being used as an example for grand rounds at Toronto’s AVM clinic. Unless we are prepared to travel for surgery, our neurosurgeon is the only one at Sick Kids that performs the surgery. Hopefully, all of the doctor’s can agree on a treatment plan. I am really concerned because the surgeon thought it was AVM, and the intervential radiologist thought that it wasn’t. If it isn’t AVM, and we resect healthy blood vessels, we are causing huge brain damage. If it is AVM, and we don’t treat it, then we risk another stroke. ERG!