I’m starting to worry and wonder if the avm that was surgically removed two years ago from my then 12 year old daughter’s cerebellum has regrown. The neurosurgeon told us there was a very slight chance of this due to the growth hormone in her body at this age, but we are not scheduled for any sort of follow up visit with him for another year! Her avm was first diagnosed through an MRI her regular doctor ordered at a sports physical, because we mentioned she was having headaches, and they were becoming more and more frequent. Well, here we are two years later, and I am seeing the same symptoms. Her headaches aren’t as extreme yet, but they are definitely occurring more and more frequently. Has anyone here had an avm regrow? If so, how long did it take? I would really appreciate any help. I know we dodged a bullet before,and I am one worried mom right now!!!
Hi Megan’s mom, I hope that Megan’s headaches are not due to AVM regrowth. Best to get her checked as soon as possible. Don’t wait till her scheduled check in a year.
My son’s AVM was resected 20 years ago after it bled. He was 5. He was lucky to survive. After surgery, we were told that we can forget about his AVM. However, two years ago, he was having some vision issues and his opthalmologist ordered an MRI because of his previous brain surgery. We were referred to a neurosurgeon who ordered an angiogram which confirmed that his AVM is back and in much bigger size, grade 3. Fortunately it hasn’t bled and we had time to consult several neurosurgeons and had to decide between gamma knife or another craniotomy. We opted for a second craniotomy last year which fortunately was successful. His peripheral vision was affected but he is alive and functioning well. His neurosurgeon has recommended high resolution MRI check every 6 months for the first year and if nothing shows, annually for five years. If it shows up again, he recommends a gamma knife treatment.
I really hope that Megan’s AVM is gone for good. It is heart wrenching to go through that experience a second time. I can only wish that Megan and your family will not have to go through that again. All the best! Marissa
Hi Megan's Mom,
I really hope this is not a regrown!
my son's surgeon told us if they got everything during craniotomy, then AVM will not regrown.
did the doc did an angiogram rigth after the craniotomy to ensure they cleared all the AVM and did they do a one-year follow up to ensure it is clear?
I would definitely seek for second opinion in your case.
Keep us posted.