Spinal AVM Experience

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

Yes prayer was key for us too....

My wife was recently (Jan'2016) diagnosed with AVM at C2 spine. It's a venous AVM with veins feeding aneurisms in her head. One of the aneurisms burst in her head which is what started our discovery process, she was diagnosed 24 hours later with the AVM. She too received embolization which has blocked 90% of blood supply to AVM and pressure to aneurisms. For her treatment, our best option at this point is to Radiate the AVM. I've been doing a lot of research regarding Gamma Knife, Cyber Knife, other. My wife will have Cyber knife procedure using the Linac (Linear accelerator) technology to radiate the AVM over time. Concerns I have are swelling of the AVM in her spinal cord, swelling of the spinal cord, scarring of the spinal cord once the AVM has been obliterated. I went through all of these questions with her doctor who is the chief of neurosurgery at Methodist hospital in Houston, Gavin Britz. I've done weeks worth of research, and am confident he has prescribed the right treatment as well as consulted with other neurosurgeons around the country. Every AVM is different, but thought I'd share.