I'd like to hear from those of you who have had the heel cord lengthening surgery...what are your thoughts about having it at a young age vs. waiting til the adult years? Also, how has this surgery helped you, and are there any drawbacks to having had it?
My son Noah is 7 years old and has spastic diplegia CP. He had SDR surgery four years ago and is highly functional. Our Dr. here was considering a foot osteotomy, but has decided to hold off on surgery until he can't function well anymore. We got a second opinion from Dr. Campion at UNC (to see if he had any ideas about braces, since Noah's feet won't tolerate them any more).
Dr. Campion said he recommended Noah getting a femoral de-rotational osteotomy and lengthen his heel cord at the same time as soon as possible. He thought doing it early would help prevent further bone deformities.
We're trying to weigh these two vastly different options, and decide what to do.
Thanks for your help!
Another question...lots of research seems to say that heel cord lengthening in patients with spastic diplegia has a high rate of causing a crouched gait. Anyone with spastic diplegia out there who can speak about this? Also, which pediatric surgeons are said to be the tops in this type of surgery?
I had it done around your son's age--without it, I would have been walking on my toes which would have put me in a chair in a big hurry. My one foot managed to stay flat through growth but I'm up on the toes of my right foot again so now I can't walk without my crutches. Keeping my shoes on keeps the right foot flat so I just do that now to avoid another surgery.
I don't see the downside of doing the heel cord now but I'm 38 now and I honestly haven't been to a "CP" doctor in yrs (mainly because my area has none) so I don't know if what I say helps at all.
The PT in St. Louis just told me that SDR patients there are having amazing results with a percutaneous heel cord lengthening. Did you find that your calf muscles were weaker after you had the surgery? They say it weakends them, but I wonder if patients can really tell much of a difference.
I don't remember that being an issue for me. I'll say this--you know your son better than anyone, trust your gut. You will see 5 different doctors that have 5 different opinions and trust me, they all think they're right.
Having CP is like robbing Peter to pay Paul, you can't have everything. I had BOTH my ankles fused yrs ago (and had the right one re-done after it turned in AGAIN. Guess what? It's as bad as it ever was AGAIN. so now I live with a severe turn in my right leg. One of these days my knee is going to pop right out of the socket because it's so bad, but I live alone and I'm looking at a yr in rehab post-surgery so no thanks.
As I tell my Mom I hope something else happens before the knee pops out--just fix it when I'm already unconscious thanks lol
You'll have to make choices you never even dreamed of and so will your son as he gets older, you can take opinions under consideration and do your best to educate yourself, but I truly believe it all comes down to what your heart tells you.
OK, we've decided what we're going to do. Dr. Campion at UNC had suggested that we do bi-lateral femoral de-rotational osteotomies (FDO) to correct his pronation and in-toe gait. He also wanted to do soleus and gastroc percutaneous lengthenings as well as botox the hamstrings and abductors. We were seriously considering this when we heard from St. Louis that Dr. Parks hardly ever recommends the FDO for his SDR patients. Then we sent videos to Dr. Parks and he said it looked like "too much surgery" to him. So we're headed up to St. Louis in December. The PT up there thinks he'll probably recommend heel cord and hamstring percutaneous lengthenings. We're trying to figure out whether to take a train or drive up there. It's an 11 hour drive for us.
I talked with another mom up there whose son had SDR when he was five. He never had another surgery. He's been stretching every day and is active in sports. He runs up hills to strengthen his legs. He's playing varsity football. She suggested we try strengthening first, but I realize that everybody's different. Although that sounds great, I think we're going to go with the surgery and then try the strengthening and sports things.
If this doesn't work, we may still have to get the FDO's with Dr. Campion someday.
We're hoping that the surgeries will help Noah fall less and that they'll help him be able to fit into his braces again so that he can get that extra stretching from the brace. I think we'll try to go some without the brace, too, so that he can strengthen some.
We're going to be in St. Louis a week and a half before the surgery, because of the Dr. appts. and then waiting for an insurance pre-certification. Does anyone know what we can do for fun while we're waiting for the big day? Has anyone ever stayed in one of the suburbs nearby vs. staying at the hotel near the hospital?
Dr. Dobbs will be doing the actual surgery--has anyone had any surgery done by him?
Last edited by nwmom; 10-16-2010 at 06:58 PM.
Reason: add a doctor's name