My 11 year old devoloped obstructive sleep apnea which led us to do an MRI to discover the cause of OSA, that’s when we discovered a 6" tentacled mess of AVM throughout his nasal, sinus, and throat. Gamma knife has been effective, but as he is growing quickly so does the AVM. We have treated it 4 times this year and he tolerates the treatment well. Just wondering what our future holds. Would love to know your experienced along this line!
Hi Taylor
Thank you for your kind reply
Yes I am in touich with Dr Buckmiller’s colleague there, Dr James Suen. they are both very experienced in avms, pioneered treatments and have a caring approach. If you ever prefer sometimes to email me on treatements and surgeons please feel free
Wishing your son the very very very best
Soteris
Hi Taylor. You may look up Brooke Aimee’s page and talk with her mom Jody. Brooke’s AVM isn’t in her throat (that I know of) but defintily in the sinus and nasal area.
I’ve never heard of GK being done outside the brain!!! Where did you have this done? I’m very interested in hearing about it. And I imagine as your son reaches puberty, the growth could increase. I’m sure your docs have mentioned this, as it seems to really affect most with non-brain AVM’s this way. Definately did for my facial AVM!
Also, Luis C has throat involvement and has a trach. He is in Spain but his english is very good!