It’s been a while since my last post…
My daughter’s AVM is in the left lateral ventricle. She had an hemorrhage in April 2015 when she was 3, followed by Linac radiosurgery a few months later with luckily no deficit or side effect after both the hemorrhage and the treatment.
The AVM was declared gone in late 2016, a year after the radiation, but we found out in late 2018 that it came back to its original location and size, as it can happen with children.
My daughter is now 8 and will have Gamma Knife radiation on Thursday in Marseille, France to prevent future hemorrhages.
I am hoping that this new procedure will be as painless as the first one but with better long term results. It’s probably a lot to ask for but also more difficult to handle than the first time given that she is much older, more sensitive and aware of her condition.
Hi Virginie, and sorry to hear that your daughter will be requiring further intervention. I had Gamma knife in 2016, the only pain I experienced was having the frame attached to my head. They do freeze it locally. Once on it was uncomfortable, and immediate relief when removed. The procedure , other than the frame, was painless. Will be thinking of you and your daughter on Thursday. Take Care, John.
Thanks John. My daughter was asleep the whole time (7 hours of general anesthesia) and it seems that the procedure went well. We have been told to monitor the effect of the radiation with an MRI/MRA in 6 months, one year and 2 years and come back for an angiogram in 3 years. Apart from small marks on her forehead and pain from the angiogram she is feeling OK, albeit very tired.
Great to here it went well! I had MRI a one year, two years and then angio at 27 months and got the all clear. We are all thinking of her, and hopefully you are experiencing some relief and look forward to the 6 months MRI! Take Care, John.
V,
Cheers to YOU that you are taking many steps, already, to help your daughter w/the AVM problem! What an ANGEL you are for her! God Bless you, your daughter & the FUTURE!!!
L