Luke is scheduled for his second surgery on February 9th with Dr. Spetzler at Barrows Neurological Institute. I have only spoken to them on the phone since we are traveling from Missouri but they seemed baffled that the AVM had returned. The surgeon I spoke to told me that the post surgical angiogram showed it to be completely resected.
Luke is being very strong although he has shown some anxiety over the news. It is different this time since he has not suffered a bleed we are able to focus more clearly on being prepared. I have been working on a list of things that we will need to bring on our journey. The outpouring of community support has been phenomenal and we are in complete awe of the selflessness that others have shown. My brother even started a go fund me account to help with travel and medical costs.
Have any of your children experienced a second craniotomy? Do you have any advice for us moving forward?
Thanks for any and all advice to help Luke have the best experience and please pray for a positive outcome!
My son Ryan had a second craniotomy. Like you, the surgeon was sure he got it all the first time around based on his post-surgical angiogram, but at his follow-up angiogram 6 months later, it had grown back. He had a bleed the first time around, which is how they originally discovered his AVM, but he didn't have one the second time around.
It's stressful, certainly. You all thought that you were done with this whole thing, but you aren't. We found, though, that we weren't as stressed the second time around as we were the first because we knew the "drill" by then. Ryan wasn't as stressed, either, and everything went fine. The one thing we were told was that the risks of complication were slightly higher (about 5% higher) the second time around due to the surgeon having to cut through scar tissue from the first craniotomy. So that worried us a little, but the benefits still FAR outweighed the risks for Ryan.
Our surgeon was baffled, too, when the AVM showed up again, but it's not unheard of -- just uncommon. Our sons are in a special club, it seems. A cool, special club reserved for awesome kids like ours. :-)
So sorry to hear about Luke's second craniotomy. It is good to hear that Luke's AVM has not ruptured this time. I can totally relate with the shock of going through it all again. And like you, because my son's AVM has not bled this time, the doctors were able to prepare better prior to my son's second craniotomy. They were able to send my son for a lot of testing, MRIs and angiogram to fully prepare. In fact, they were able to downgrade my son's AVM from grade III to grade II after performing the WADA test. My son had a second craniotomy in August 2015 in Japan. His first craniotomy was done in 1995 when his AVM ruptured. He was 5 years old. The angiogram done 3 weeks after the first surgery showed that his AVM has been obliterated. We were told that we don't have to worry about it again. Fast-forward to 2014, he had some vision-related issues and the ophthalmologist recommended an MRI which showed that his AVM is back and much bigger at the same site. We went back to his paediatric neurosurgeon and was recommended to have gamma knife radiotherapy. However, after seeking second opinion, we went for a second craniotomy with the option of gamma knife in case of any residual AVM after surgery. His angiogram 2 weeks after surgery showed that his AVM is obliterated. His high-resolution MRI after 3 months was clear as well. His neurosurgeon has advised regular scans every 6 months for the next two years and yearly for the next three years to make sure that there is no regrowth. And if there is regrowth, he said that it will be small enough that it can be treated by gamma knife.
I wish you and Luke all the best with his second craniotomy. I pray that Luke will have the best outcome possible. Take care, Marissa