Hello - introducing me and my family - my name is Chris and because of a family history of AVM/stroke, my wife and I decided to have all three of our kids tested back in November via MRAs. Lo and behold the dr found a 2cm AVM in our 9 yr old son’s left temporal lobe. We researched embo, radiation and surgery and have chosen surgery. I am curious if anyone else is on this forum as a way of representing a minor and what action they took before or after surgery. Also, we are very fortunate to have a choice between Childrens Minnesota Hospital and Boston Childrens Hospital so if anyone has experience with the pediatric neurology depts of these two hospitals, I would love to hear it. Thank you.
Chris, hello and welcome, sorry I do not have advice for this situation, but you have come to the right place, best wishes to to and your family, god bless,
Chris,
I’ve moved your intro out to your own thread. I know you joined a couple of months ago and have got lots of connections with folk already but thought you deserve your own space.
However folk can help further, just ask.
Best regards,
Richard
Hi Chris,
Is it common for AVMs to run in the family? I thought they were random occurrences. My AVM bleed was in 2006, and I was ten. While I had to physically have the blood drained at the time, I had a surgery called the Gamma Knife twice to treat the AVMs. It is non-invasive, other than the “frame” that is mounted on the head to target the gamma rays. Gamma surgery was suggested for me because of the AVMs were so deep in the brain. My medical team also tried using an angiogram to “glue off” the feed to the AVMs (between Gamma Knife surgeries), but because the vein to the AVMs did not go straight, it did not work and I had the Gamma Knife again.
All of my treatments were in Canada, so I cannot suggest a hospital, but I wish your family all the best.
-Julia
Hermione711 what hospital in Canada were you treated at?
The bleed was drained at the Children’s Hospital of Eastern Ontario in Ottawa. When a bed opened at the Hospital for Sick Children in Toronto, I was moved there to be closer to my home. However, all of my major surgeries since then have been at Toronto Western Hospital because they specialize in neurology. I also got a second opinion from a doctor at Sunnybrook Hospital in Toronto when my team at the Hospital for Sick Children did not feel I needed surgery. My doctor from Ottawa had told us about the Gamma Knife in the first place, and my family had to be very proactive for me to get the care I needed in Toronto!
1 Like