Thursday, February 9, 2012

In Which Connor Is A Question Mark

So today Connor had his appointment with the orthopedic surgeon to talk about the little guy's scoliosis and his hips.  Jer was able to meet us at the hospital, which was great!  It's always nice to have Daddy Backup at doctor's appointments.

Anyway, so first we went and got a whole bunch of x-rays done of Connor's spine and pelvis.  They put them straight into the computer so the doctor was able to look at them right away.  It took about forty-five minutes to get the x-rays done on the opposite side of the hospital, but when we got back to the orthopedic clinic they were able to take us straight back to a room and five minutes later we were seeing the doctor.  So that was pretty nice.

Connor's spine is curved and rotated forward just below his neck, like a giant question mark.  In the past year, Connor's scoliosis has progressed from a 33 degree to a 40 degree curve.  That's not good.  However, he's still fairly flexible, which is good.  The doctor put in a referral for a thoracic-lumbar-sacral orthosis brace-- or a TLSO brace for short-- that the little guy will wear any time he's awake.  This is to try and keep Connor's curve progressing as slowly as possible.  The brace won't correct the curve that's already there, though. 

Because Connor's scoliosis is related to his neuromuscular issues, it's pretty much a given that he'll need surgery at some point.  His scoliosis is very likely to continue to progress, and once the curve reaches 50 degrees or more they'll need to do something about it.  Any more than that and it can start to cause spinal nerve problems and also crowd his heart and lungs, which could cause some really serious issues.  We want to hold off on surgery as long as we can though, because we want him to be as close to finished growing as possible before any kind of spinal fusion is done.  The magical age we'd like to get him to before hitting that 50 degree curve is ten years old.  Hopefully a brace, along with positional seating, will help us get there. 

If we can't make it to age ten before requiring surgical intervention, what they'll probably do is place a "growing rod system" along either side of Connor's spine.  Basically they'd attach the rods to the top and bottom of his spine (or possibly his ribs, depending on the system used) to help straighten it out.  His spine would not be fused, so it could continue growing.  He would need to have surgery to adjust the rods every six months until he reached his full growth and they could do a spinal fusion. 

So yeah, spinal surgery every six months.  Eek.  We'd like to avoid if at all possible.

His hips actually look about the same, which is good.  Connor has an issue where his femurs meet his hips at the wrong angle, so the bone is partially out of the hip socket.  Right now it's not causing him any pain though, so they don't need to do anything about it.  Hopefully that will continue to be the case!

Anyway, we'll get the TLSO brace made as quickly as we can, and we'll go back to the orthopedic doc in about six months to see what Connor's spine looks like then.  Hopefully we'll have slowed things down a bit!



Lisa said...

Hey Jess,
I read this blog called Girl to Mom. Part of her blog is about infant/juvenile scoliosis. From her home page, click "Bexon's Story" to read all of her personal google research and doctor-finding quest. It's always nice to know others' stories, and maybe she will know some other tricks. Good luck with the little guy!

KLB said...

My daughter is a paraplegic, has idiopathic scoliosis, wore a TLSO for years and years and finally had a spinal fusion in the summer of her 13th year (2010). If I can be of any help or support, I would be thrilled. She wore her TLSO 24/7 when she wasn't bathing or swimming. (By the way, Children's Seattle has a wonderful adaptive swim program for kids like Connor, if it isn't too far to drive. She thrived there and the warm water was so great for her contractors.) If I can be of any help, please let me know. kbrtmyr AT mac DOT com. Karen

KLB said...

I mean "contractures" (darn spell check!)

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