Shrinking out of AFO

[kidsrustx]

My son has had his AFO for almost a year. Unfortunately he's 14, 5'7" and still growing. So his nerves in his leg are getting more damaged. As a result his leg has been becoming more atrophied over the past year. His AFO has been getting a little loose, but it's been still doing the job. Well, was doing the job. Then he had back to back golf and baseball practice. His ankle has been swelling again. We haven't had this problem since he got his AFO. I know it's because the brace isn't tight enough. There is probably about a quarter inch between his ankle and the brace on both sides. So do you think they can add padding to tighten the brace or will he have to have a whole new one made?

[Lifeisgood]

I know absolutely NOTHING about AFO's but my guess would be he should have a new one that fits properly in order to prevent further damage. When does he see the doctor next? Or perhaps you might want to call his old physical therapist from after his surgery to ask her opinion? Good Luck!

[bcain]

Time for a check with the orthotist, they'll know best.

Question... Is it acceptable that his leg atrophy is occuring? Is there anything to be done for it? Is he losing any function? Sounds worrisome to me. What have you learned please tell.

[Dodger67]

What is the cause of the atrophy?
Why is there progressive nerve damage?
These questions need answers and corrective action if possible.

SB is not supposed to be progressive but if it is, the usual suspect is tethered cord.

[kidsrustx]

His cord is retethered. Right now the only thing getting worse is his left leg. The atrophy is getting more pronounced and his middle toe is completely paralyzed. His bladder is doing great still from his detether in Aug '08. I suspect that his bowel sphincter may be a little bit weaker (he was having some accidents), but we have overcome that with an enema regimen. Since the only thing worsening is his leg that he has to wear a brace for anyway, we do not want to have another surgery yet. Seth's tether is pretty complicated with fatty deposits surrounding his nerves. His Lipomyelomeningocele went so long without being diagnosed that his nerves didn't grow as long as they should have. His nerves are now getting overstretched as he is growing. BUT surgery is very risky since his tether is so complicated. For now the Risks outweigh the Benefits.

I have an appointment with his Orthotist on the 23rd. Hopefully they can fix his brace rather than having to get a new one. The one he has now works well for normal activity. It's just the more intense activity of sports that is causing him pain because his ankle is not being properly supported.

[technovicki]

A GOOD orthotist will know best. If there is too much space it will probably be better to get it re-made. I've had padding adding to the leg portion of the brace but it gets hot really fast. If he is very active he will get very sweat and add that with any friction then you have a bigger problem of pressure sore and blisters, callouses. A good orthotist for me is someone who has SB experience and truly takes into consideration the patient's activity level.

[LisaJoy]

Be sure to let us know what the orthotist says. It seems like it would be possible to add padding, but technovicki is right -- very hot, especially in central Texas! And it might not be possible to get a good fit, with all the contours in the right place.

I totally understand about the risk/benefit thing. I've read that a severe lipomyelomeningocele is one of the most complex lesions there is and one of the riskiest to operate on, especially repeat operations. Puts ya'll in a tough spot, but it sounds to me like you're doing the right thing -- watching very closely.

I have lmm as well as split cord malformation (two spinal cords tethered into two separate lipomas) -- I'm retethered and have had to think carefully about where the tipping point is, when it becomes riskier not to have surgery than to have it. For me, personally, if my neurogenic bladder gets significantly worse (especially if I develop any reflux), that will be the time to act. But of course -- I finished growing well over 30 years ago! So I'm at least not likely to develop a sudden, marked deterioration.

I think you will know when the time comes.

[kidsrustx]

Went to the orthotist yesterday. He's trying adding a strap to keep his ankle in his brace. Hopefully that will work. Seth's foot is apparently sliding forward in the brace which is what is causing the ankle problem.