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Monday, November 26, 2012

Surgery - what to cut?

Emma today.  My little Miss Sunshine.
Today was a mixed bag.  We started out the morning with an appointment with a surgeon at a local Shriner's hospital for a second opinion for Emma.  The hospital was amazing.  The people were so very friendly, they were able to get us in for a second opinion without a long wait, and they even provided free parking in the downtown location!  I am sure that magic occurs there daily - heck it's definitely magic when a family knows their child will get the medical care necessary even if they do not have money or insurance to pay for that care.  In this day and age that is so very, very special.

The second opinion was for the adductor release surgery and hamstring lengthening her doctor recommended.  You can learn more about it in this post here.  The doctor we saw today was nice.  He commented that the hospital Emma typically goes to is world class and she looks like she has been getting very good care.  We were glad to hear that - even though we pretty much knew it it's still nice to hear it from another very respected doctor/institution.  We gave him a bit of background on Emma and he said sort of casually that Emma has quite severe CP.  Ouch!  I don't think that should ever be casually stated in passing.  To parents.  Especially parents that have only recently come to terms that Emma's CP is not mild and are wrapping their heads around Moderate CP.  Not severe.  But, alas, almost all the doctors Emma has seen seems to mention this quite casually so this is not a knock on this doctor at all.  Still....ouch.

The doctor looked at the Xrays we brought and agreed that Emma should get the adductor release surgery.  He didn't agree with the hamstring lengthening.  He had good reasons for it and I was glad to hear them.  His main reason for not recommending it is that since Emma isn't walking she most likely won't be helped by the procedure and it's likely the muscle will regrow pretty much the same as it already is and that since he can straighten her leg without much trouble it probably isn't needed just yet.  Truth be told I wasn't sold on that portion of the surgery which is one reason why we sought a second opinion.  He also told us about casting vs. not casting for the adductor release surgery.  Emma's main dr. doesn't cast.  This doctor does cast - he said it's a 2 week casting and mostly for pain management.  He didn't cast in the past but it was too painful for his patients so her believes casting is better for the child and avoids having them chock full of pain killers for a long period of time.  He did say, though, that not casting is a bit in vogue right now and so just as many doctors likely cast as do not cast.  I didn't know that so it was good to find out.  He also said cutting and surgery are very in vogue, too, with lots of doctors want to go straight to cutting.  Hmmm....I had a feeling about that.  If you go to a surgeon their likely gut reaction will be to cut.  That is a reason we are bringing a Physiatrist onto Emma's team.  Emma sees her in December and I'm looking forward to the appointment since she comes very highly recommended from other local parents.  Plus her name is Maura, which for some reason made me smile when I found that out ;-)

Where do we go from here?  Well, we have the physiatrist appointment in December.  We have a family consult for the surgery with Emma's original doctor in early January where we will discuss the one procedure vs. the two and casting vs. not casting along with expected time to recover, etc.  We have the surgery scheduled for late January and exactly what procedure(s) are done at that time will be dependent on what we decide at the family consult.

If anyone reading this has been there, done that and has any input on casting vs. not casting and adductor + hamstring vs. only adductor lengthening please leave a comment below.  I'd love to hear your experience.

1 Comments from readers:

Baby Elana said...

We've done serial casting, botox and casting, lengthening (hamstring, medial hamstring, 4 foot tendons, 1 hand tendon rerouting), and even whole leg rotation (cutting the femur and turning it 30 degrees). We've had great outcomes (12 and walking)

I would never suggest that what we did would work for anyone else. I love that you are using shriners and getting second opinions. Also, taking time to think about it is good.