Connor Is Home- He Still Has A Long Journey Ahead Of Him

Connor returned home this past week.  I could only wish his recovery was going as smoothly as mine.  It's too early in the game to see just how successful his surgery was for him.  As a fellow Chiarian,  I've discovered that physicians in the New England and most of the USA just don't have the knowledge or experience with chiari malformation. 

Unfortunately,  Connor's first surgery was done by a physician who wasn't completely familiar with chiari.   You see, Chiari rarely travels alone.  It's best friends with other diseases and conditions like Ehlers-Danlos syndrome  (eds), Syringomyelia, Tethered Cord Syndrome, Craniocervical instability...and that's to name a few.  When a physician sees that you have chiari,  they need to look into these other conditions.   You can't address chiari alone.  That's what happened a year ago with Connor.  Which, as a result, created more severe problems.

On February 29th,  an amazing team, worked feverishly to correct the surgery Connor had last year.  Time will tell if it was successful or will provide even a little relief.  But, he continues to be in pain.  It's hard to decide if it's post op pain or the old pain unchanged.

Aside from chiari, Connor suffers from EDS, which...just to make it easier to understand. ..effects healing.  These pictures show you how his incision is healing.

As a result, he requires a noninvasive halo style neck brace.  The immobility is frustrating Connor and making him not want to participate in any activities.  But, he is wearing it like a boss.  This kid is pretty darn cute.

Connor may be back home but the journey isn't over.  He still requires several trips to NYC and this doesn't come cheap.  This last trip, to include: travel, lodging, parking, food, meds, the brace...etc cost Connor's family $7,000.  There are more trips planned.  They couldn't have covered these costs without the help of the community.   Please consider donating to their gofundme page to help cover future travel.

To bring awareness to the public, as well as the medical community,  Connor's mom, Erika, and I are organizing a Conquer Chiari Walk Across America walk September 17th.  Please join us!

You can always follow Connor's progress on Facebook