Sorry for the continued questions, but we have some questions. What typically happens with the decision on gamma knife, mobilization or surgery. Do the surgeons typically tell you which of the three would be best, or do certain facilities only do certain types. We were pretty confident with spetzler and thought he was pretty much the only one who is proficient at pediatric spinal avms. Now that surgery seems to be inevitable we have been looking around and it seems like the mayo clinic, Johns Hopkins, nyu, Emory all seem to pop up. The only thing is it seems like they are really pushing gamma knife, and we thought actual surgery was the best way. We did not know if most places only do gamma knife. Also they say on there pages spinal avms, but typically when you click on he page it starts to show more about the brain avms.
Gamma knife would be an atypical choice for a stage one spinal AVM. Gamma knife is usually used when an area is surgically inaccessible or otherwise not appropriate for surgery. You are right that treatment options sometimes depend on the particular technologies that centers are most experienced with or that they have available. Best to go to a place that has all types of treatments but selects the best one for the particular AVM.
Sorry, not as familiar with spinal AVMs, but what I was told concerning brain AVMs was go with surgery, if possible. I started with experts at AVM surgeries, as well as other treatments and asked their opinion. Dr. Spetzler is a great place to start.
Where do we find out which centers have what technologies. We have been really feeling the same thing about spetzler, but now that it is coming down to the wire we are getting nervous to make a decision for someone else. It is for our son who is 9
At some point, we parents have to make a leap of faith and just go with our instincts. There is no one piece of information you can get that will make this decision easy. You are doing a great job advocating for your son. Take feedback from the places you have sent the scans too, and then decide where you feel most comfortable.
When our son was 9, he had a brain hemorrhage and was diagnosed with an AVM. We went back and forth about whether to do gamma knife or surgery, and when we talked to the guy who specialized in gamma knife, that's what he recommended. When we talked to the guy who specialized in surgery, that's what he recommended. We confronted both of them about WHY they each thought their method would be best for our son, they both said (with a smile) that they were each biased towards their own specialty. It's true. For the most part, they are. Spetzler is a well-known and great surgeon, so he is biased towards surgery.
All of that being said, I'm honestly not well-versed on spinal AVMs, so I really don't know if one is truly better than the other. I would ask each of them what the risks and benefits are of each method, and have each of them give you their best estimation of the percentage chance of complications and/or failure with their method. It was based on that information that we made the decision we did for our son -- we did the thing that posed the least risk combined with the greatest chance for success for him. There will be risk with whichever method you choose; you just need to weigh the risks and make the best decision you can.
Has anyone ever pointed out it’s no fun being a parent in these situations
I hear you, Jon's dad. It's quite agonizing. You will see, though -- there is relief once the plan has been determined.