A few months ago I expressed my frustration over Caleb's leg contractures. We have been fighting a never-ending, never-gonna-win, battle with his leg/feet tightness. It has gotten progressively worse over the last year and has begun to affect his ability to do things. He can't get his pants on without help because the tightness in his feet cause them to get stuck in the pant legs. He has trouble getting in and out of his wheelchair because his legs are so stinking tight. The contratures are hindering his ability to move forward with physical therapy. In some ways he is the strongest he has ever been but the leg tightness is holding him back.
So why is he progressively getting tighter? Well I think it is a result of several things. First, his tethered cord release in 2012 robbed him of his ability to walk. He had to start from square one. Because he could no longer walk, he didn't get as many opportunities to get those legs straight. We fought the tightness for a long time with stretching and bracing until the inevitable happened...he grew, and grew. Growth is by far the biggest cause of these contractures. He has shot up like a weed in the last year and is growing by the second. Trying to grow with tight hamstrings just makes the tendons tighter which makes the muscles shorter and less likely to straighten. That's where we are now.
After exhausting all options to get those legs straight, we realized that surgery was the only way. After talking with his physical therapist and doing some research we learned about a less traditional approach to contractures. It's called Selective Percutaneous Myofascial Lengthening (SPML for short, or Percs Procedure).
What is the SPML?
There are only a couple of doctors in the country that do this procedure. Luckily one of them happens to be in Texas. We met Dr. Yngve for a consult over the summer and Caleb is a candidate for this procedure.
Still confused? Here is a good illustration. Picture the contracture as a rope, pulled as tight as it can go.
Fraying the rope allows the muscles to lengthen and stretch.
Caleb is having the SPML procedure on both legs, specifically the hamstrings as well as the groin/hip area. Caleb does have some significant tightness around the knee so Dr. Yngve will also be doing capsulotomies of the knees. This will actually require an incision into the knee.
Typically the SPML procedure is outpatient but because of the extra knee work, Caleb will stay one night in the hospital.
The plan (as of right now) is to do serial casting for a few weeks after the procedure. We will have to travel once a week so that Dr. Yngve can recast. Each casting will force the leg to straighten even further than the week before.
Caleb has the surgery next Wednesday (yes, the day before Thanksgiving). Here's what you can pray for:
First, that the surgery goes well and that Caleb does fantastic. No complication, no issues, no problems ya'll.
My biggest fear is pressure sores from the serial casting. Caleb can't feel his legs very well and casting a leg you can't feel can easily lead to wounds. Dr. Yngve has a lot of experience casting kids like Caleb and he is confident things will go smoothly. That is largely the reason we are traveling weekly for the doctor to do the casting himself. So please pray for no pressure sores as a result of casting.
Pray for Caleb's anxiety. Obviously he isn't excited about having surgery but even he realizes that we have to do this. He knows things aren't right and he is frustrated as well. Pray that his spirits stay up especially during the weeks of casting when his ability to get around will be hindered a good bit.
It's hard as a parent when you have to make decisions like this. I hate that we have to put him through this but I know there is no other way. This isn't going to get better on his own so we have to intervene. I know this is the best route for him.
We meet with Dr. Yngve the day before the surgery to go over everything fully and I'll update on the blog as things play out.
What is SPML anyway? (a good article written by a mom)
SPML group on Facebook
FAQ's about SPML