A few months ago, Grayson’s physical therapist asked if we’d ever had any imaging done on his hips (we hadn’t). She had attended a conference and learned about a surgery that she thought might help him. As you know, Grayson’s spasticity (tightness and stiffness) has progressively gotten worse and worse. It’s very difficult to put him in any kind of sitting position, carry him, and change his diaper because he squeezes his knees together so tightly and stiffens his legs.
We contacted the doctor who our PT had heard at the conference. After doing some online research, I learned he is one of only two doctors in the country who do this surgery, and he’s located less than an hour from us! After reviewing Grayson’s X-ray, he called me for a phone conference and said that Grayson is a candidate for the surgery. We saw him today in clinic and reviewed the procedure and he examined Grayson so he could determine exactly what parts of his legs he can improve/loosen.
Basically, Grayson squeezes his knees together so tightly that it is slowly causing his hips to dislocate. While he isn’t in a great deal of pain because of it right now, if we don’t do anything about it, he will be at some point. The surgery will involve nerve blocks in his groin/hip area to loosen and relax the muscles. He will also have a nerve block in his thighs which hopefully will lessen the extreme stiffness we see especially in the late afternoon. Finally, he will have the procedure on his ankles, which the doctor claims will make his AFOs (ankle foot orthotics- his ankle braces) more comfortable. Right now, G flexes his toes downward in an unnatural/awkward position.
The surgery is called Selective Percutaneous Myofascial Lengthening (SPML). This is the best article I’ve found on the procedure, in case you want to read about it.
Grayson is scheduled for surgery in two weeks. I’m nervous because it’s not at “our” hospital, and I’m always nervous about anesthesia, but I’m also excited about the possibility of seeing some significant improvement in G’s quality of life and our ability to take care of him.
Have any of my Mito friends/readers heard of this surgery or had any experience with it? I found a FB group dedicated to the procedure, but haven’t found anyone with Mito who has had it done.
|Sweet boy was an angel waiting for the doctor today|