First post - although have used site for a while for information and insight.
Thought I would share some of our experience in the hopes that it might help others, or spark insights and information from others that have been down a similar path.
Our experience started Aug 2015 when a spinal AVM (roughly 6x6x5) was discovered via MRI in our otherwise healthy and active adolescent daughter. We ended up at Duke (its essentially our nearest hospital and given complexity & rarity of AVM, choosing a tertiary care research hospital was easy given how close).
While they were getting additional imaging of the AVM (which wraps the spine extending from C1 to C3 with greatest involvement of C1 and C2) to prepare for treatment, they discovered a coarctation of her ascending aorta.
At this point we were completely overwhelmed. As parents of generally healthy kids with no more medical training / experience than comes from having kids, we were mostly asking questions like AV-who? and Coar-what?
Neuro and cardio teams discussed things and decided the cardio work would go first. Excellent pediatric cardiothoracic surgeon and he replace the majority of our daughter's aortic arch to remove the coarctation (narrowing) as well as two rather large aneurysms in the same location.
Following about a month recovery from this, we again met with neurosurgery at Duke. At this point they determined that while they had extensive experience with AVM's of the brain, given the size, involement, and location of this spinal AVM, they weren't satisfied they had the correct team and specialization for this.
Based on input and recommendations from Duke, and our own investigation, we identified Boston Childrens/UMass, Mayo, Hopkins, and Barrow Clinic in Phoenix as our top options. Based on favorable interaction with the neuro interventional radiologist (and entire IR team) at Hopkins, insights from their second opinion, overall reputation, and proximity to home, we settled on Hopkins.
At this point, we're 4 embolizations in (surgery so far has been ruled out given location, size, complexity, feeders also servicing spine, etc). Lead surgeon (IR) is Dr. Gailloud, lots of other involvement from Neurosurgery, Pain Management, Pediatrics, Psychology (from Kennedy Krieger), Anesthesia. Very pleased with all.
Some general thoughts:
- take it one day, one step at a time
- all AVMs are different
- get as much information as possible
- enlist the help of others, don't try to go it alone
- pediatric nurses are AWESOME!
- nothing is certain
- don't discount the power of prayer