I really want to write about something else, but this topic permeates everything we do on a daily basis around here. So, here's the short version.
After a slew of new doctor's appointments, we are struggling with a surgical decision. Elena suffers from crouch--many pictures posted don't show it, and I haven't posted many videos lately (we've been pretty busy with appointments...I feel like that's all I do these days). Anyone familiar with E's type of CP knows what I'm talking about. We've been dancing around the surgery question for three years now, trying to buy time.
Why? I guess to see if it's worth the risk. To see if she can get strong enough to "not need it" (is that a thing? In the long run, I mean?). To wait until she is more emotionally mature to deal with the aftermath (big one here). To see how she develops, to possibly have more choices in terms of procedures. To hope that technology provides a new option. All of these and more.
They want to do a femoral derotation osteotomy on her right leg, and hamstring lengthenings (traditional-style, not subcuteaneous) on both legs. The surgeon said that recovery is 4-6 weeks (for WHAT? That sounds ridiculously short), so I am assuming it would be 2-3 months of pain/rehab/slow recovery until we can get her moving regularly with a walker or crutches.
Has anyone out there done this? Do you know if my timeline assumptions are close?
My biggest issues with this are that our trusted PTs don't want this surgery (typically they stress PT, exercise, not surgery) and the surgeons aren't involved with the rehabilitation process so they can't prepare us. I've heard lots of bad stories about this procedure--my kid never walked right again, rehab took forever, they had complications (infections, etc.)--but I haven't heard any positive stories. They must be out there, or this procedure wouldn't be so commonplace. I did find one, an upbeat teen, but this story was long ago, and I couldn't tell if she had CP or not.
Here is our current plan. (ADD NUMBERS HERE FROM Dr's Report regarding crouch) Elena had a bad crouch/pain/kneecap fractures in the fourth grade. Once her pain subsided, we followed a rigorous Therapy Exercise (TherEx) program to regain strength, in the hope of halting her crouch. Not only did we keep her from getting worse, her posture actually got better--which was WAY beyond my expectations. She always regresses in the fall, and we continue this plan. This year is different, though, and her crouch is worse.
Elena is an almost-teenager and is highly resistant to me as her advisor and coach. This means more appointments, more therapists, more trainers (read: time consuming and expensive) when she already complains of having too much on her schedule. Her main PT has cut back on her sessions, b/c she said if we can't get our exercises done at home, going to PT alone isn't enough (she's absolutely right) so we're going to PT less often, and substituting in any exercise that she will do. It's a change that hopefully will get her fitness up, and add some enjoyment.
Our current schedule is
Monday, PT (every other week); Tuesday free (if nice, bike ride); Wednesday swim (private instruction); Thursday Personal Training (gym); Friday free; weekend includes swimming (family time--we do laps and then free play) and biking (I am also working on an indoor trainer for her trike). I have put out a want-ad for a TherEx facilitator to come to our home (hopefully 1-2x/week). I've taken out Psych services (now, I'm going to try to bridge the gap. We're not ready to "graduate").
It's six months until our ONLY window for surgery (if she has to have it during the school year, she won't be able to perform well in school or stay in her chorus group; summer is our best option). The plan is to hit TherEx/Exercise/Strength hard, and re-evaluate in 6 months. Maybe we could punt another year; I'm not convinced just putting it off is the best plan, either. But this is where we are.
If you have comments, I'd love to read them. Pass this along to anyone you know that might have some insight. Thank you!
Monday, November 13, 2017
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4 comments:
Hi Amy,
I think you may remember me. I am a student of Gregg Mozgala. I had traditional hamstring lengthening at 5 years old. Technically cast was on for 6 weeks but relearning to walk took longer. I am very glad I had the lengthening. So I think it would be pretty safe to go ahead with hamstring surgery based on personal experience. My family stayed away from all bone related surgery however and I am so relieved they did NOT let the docs touch my bones.
Re: Carrying a backpack in school, I did not achieve the physical strength for that until my 20s.
Margot
http://cripvideoproductions.com
That sounds really short to me...maybe “recovered” as in healed, but not as in back to solid function. My now 8 year old had subcutaneous lengthening in the hamstrings and gastrocs done at 6 by Dr Nuzzo, so very alternative, but it took him 3 months to get back to “normal” and then was quickly much improved. He’s grown about 5-6 inches and maintained range, but is back to having inward rotation issues that started with poor sitting habits at school. During his first surgery he was still quite weak (he’s low tone overall) so Nuzzo did very little at the hip area...we think it may be time for another round.
These are such hard decisions. My kid is really resistant to therapy and the idea of surgery, and there’s only so much time to do exercises, therapy and community exercises like biking and swimming around school. He will need a lot of therapy and retraining to actually use the changed body if he has surgery - without it, he won’t get as much value out of it, so it may make sense to wait. But the longer he goes with poor alignment, the more incorrect muscle memory he builds and the more potential orthopedic damage he does. I wish I had a crystal ball.
Random commenter with CP here: I had a femoral derotational osteotomy on my left leg and hamstring lengthening on both when I was about 8, and then a repeat FDRO when I was 17. Honestly, the surgery helped a lot, and if I hadn't had it done, I don't know if I would be able to walk independently right now. I had issues with in-toeing, and to a lesser extent, crouch gait (which got worse as I got older). But the recovery definitely took around almost 6 months, not 4-6 weeks. For just hamstring lengthening, maybe 4-6 weeks, but not with the osteotomy. Every person is different, but I just wanted to throw my positive experience in there.
HI AMY.
I HAVE THE SAME TYPE OF CP AS ELENA. I JUST RECENTLY HAD PERCS ACHILLES TENDON LENGHENING AND HIP FLEXOR RELEASE ON THURSDAY SEPTEMBER 28 TH 2017. I AM STILL WEARING AN AIRCAST UNTIL I SEE MY ORTHOPAEDIC SURGEON NEXT TUESDAY. I CAN STAND BUT WALKED WITH THE AIRCAST IS DIFFICULT. I CAN TAKE IT OFF FOR SHOWER AND IF I AM JUST SITTING ON THE COUCH BUT I HAVE TO WEAR IT TO BED. THEY SAID THE AIRCAST IS LUGHTER THEN PLASTER BUT ITS NOT VERY COMFORTABLE TO SLEEP IN. PHYSIO WILL START AFTER THE BOOT COMES OFF, I KNOW THAT THIS IS A DIFFERENT PROCEDURE THEN WHAT YOU DISCRIBED.
MELISSA
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