Hello all. New to the board. Been reading various posts and it's been incredibly helpful, so let me start out by saying thanks.
My son is 11 and has Spastic Diplegia. We've been lucky. It's relatively mild. He's a very active kid - has a black belt in Taekwondo and plays goalie on a lacrosse team, and he's a great kid.
He's been in PT since he was 10 months old and we have had various courses of botox over the years. He wears AFO's almost every day and wears an afo with a knee immobilizer at night.
We've reached a point where our orthopedic surgeon is recommending surgery - gastroc and hamstring lengthening. While my son only walks with a minimal crouch & bounce, he feels that there is a fair chance that it will get worse as he goes through growth spurts during puberty. As I've said, we've been lucky and he's really active - so the last thing we would want to see is him losing any ability. So not only will the surgery help his gait and posture now, it will also help prevent any worsening - so it would seem.
On the flip side, his PT says "He's so mild, why would you want to mess that up by operating on him?"
So we have some disagreement in our team. Unfortunately, because he is, indeed, "mild" there is no cut-and-dry answer here. If he was worse, the decision would be easier, and if he was milder, the decision would be easier.
So I'm hoping you all can help with a few questions:
1. Did any of you experience yourself or your child getting "worse" as you grew? Is there any validity in our surgeon's concerns?
2. What experience have any of you had with gastroc and hamstring lengthening? I see a lot about heel cords, be he's not having that. What was the surgery like? How was the recovery? Have you shown any improvement?
3. Lastly, for you parents out there, how have youcoped with these "should i or shouldn't i" dilemmas?
I've had hamstring lengthening surgery (one of about hald a dozen surgeries total) so I may be able to shed some light on this for you. I had the surgery when I was 13 and am about to turn 22 in October. Your son sounds like me at his age. I was very active, though I stopped wearing AFOs when I figured out how to take them off myself
As far as lengthenings go, hamstrings are a piece of cake. By far the least amount of pain and fastest recovery time of any ortho surgery I've had. Your son will probably be in long leg casts for 6-8 weeks and imobilizers for another month. The only down side for me was that my casts kept sliding down and the plaster cut up the front of my ankles really bad. So much so that my doc removed the casts early. Also, I got bed sores on my heels from being in a hospital bed for a week. Those were the worst (I ended up staying in the hospital 5 extra days because anesthesia makes me very nauseous and I refused to eat). Other than that everything was fine. Once I switched to waterproof casts I was able to shower, go swimming, etc.
I could straighten/ fully extend my legs after the surgery.
Lengthening is probably the reason I can still walk today.
I grew about 2 inches.
I lost almost all the strength and stability in my legs. Presurgery I was very into extreme sports (skateboarding, surfing, bmx). I can't do any of those things now because I'm not strong enough and my balance sucks.
It took about a year for me to be able to fully bend my knees (such as crossing my legs indian style).
I developed lordosis.
My knees hyperextend.
I experience much more fatigue (but I am much older now... that has to be taken into account!).
My hamstrings are contracted again, but they can't be lengthened again. You can only lengthen so many times.
I shrunk 2 inches when my hamstrings contracted (so I came out even ).
Now, even though my cons list is much longer, that doesn't mean I think it's a bad surgery!
I think you and your son will have to consider the degree of contraction. How crouched is his gait? Do you think it will get much worse?
As I said, if I hadn't had mine lengthened I would probably be too crouched at this point to walk.
Is he willing to (possibly) give up some strength and/or stability? I had adapted to do all the things I loved (like skateboarding) with the way my legs were before surgery. I was horrible, but I could do them. I think it was just too much of a change for me to learn all over again. This may not happen to your son, but I think he deserves a fair warning!
At this point in my life I still walk completely unaided, though I have been trying to get a wheelchair for over 2 years now to deal with fatigue. Looking back I probably would still have the surgery, I just might have waited a few years so I could have a little more time doing what I loved.
Hopefully others will be able to share their experiences!
The Following User Says Thank You to JellyRJFan For This Useful Post: Annie7679 (10-23-2011)
When you say you lost your strength and stability, do you feel it was because of the hamstring operation alone? (You mentioned you have had many operations...)
In discussions with his surgeon, I have been led to believe that the loss in strength and stability is temporary, and with intensive PT and strength training, he should be able to get back where he was and even improve.
Also - any thoughts on gastroc lengthening? They are planning to do both at the same time...
I feel it was mainly due to the hamstring lengthening. A few years later I had hammer toe repair/tendon release/lengthening on my right foot, but that didn't do much other than make one of my toes straight. I've never really had much movement in that foot.
My doctor told my parents that I would be back to where I was or better after the surgery. I really don't have any answers as to why I'm not. I suppose it just happens with some people. Upon reading my records a few years ago I found that my surgeon was concerned about weakness as a possible outcome, but probably not enough to share these concerns with me (he may have with my mother).
But you know, it's not that big of a deal. I've tried to move on and find other passions. My philosophy is that you've just got to roll with the punches
I'm sorry, I don't have any expertise to share regarding gastroc lengthening, but I know there are others here who do!
You are raising a lot of good questions about potential surgery for your son. We have been through this recently, so I'm happy to share what I can.
Our son is 15 and has spastic diplegia. He walks with crutches, but has great stamina and could cover a couple of miles pretty easily. (He doesn't need the crutches indoors). He did all the usual CP things--AFOs, Botox, serial casting, leg immobilizers--over the years. As his orthopedist predicted, he began to develop more of a crouch in his knees as he reached his adolescent growth spurts. His doctor, a nationally-known orthopedist, thinks kids like this should not be operated on until the crouching is well underway, since you can really only do the hamstrings once. Do it too early, and the kid might grow a lot more and start crouching again. Yet, as you wait, they can be getting uncomfortable from the crouch. In our son's case, the surgeon decided 14 was the right age, after he had gotten to about 5'3" and his knees were getting pretty bent. The surgeon also believes in playing it very conservatively. He'd rather go back and do more later than try to do it all at once. This turned out to be a great approach, because while we'd all thought he'd need his heelcords done as well as his hamstrings, once they did only the hamstrings, the heelcords seemed to take care of themselves. (His feet are now totally flat). He was immobile for a couple of weeks after the surgery, very tired for about three months, and not fully back to strength for nearly a year. His legs look straight as can be, he's gotten out of AFOs for good, and isn't needing leg immobilizers so far. He was a little tippy for awhile, but lots of exercise and PT have helped a huge amount. The secret is to really follow a fitness program and keep him stretched out. So, think about delaying for awhile (no rush) and get him into the habit of staying in shape.
Meanwhile, I empathize with your parental dilemna about what to do. We've found it very frustrating that there's no one 'super-expert' to sort through the opinions of the surgeon, PT, pediatrician, footbrace tech, etc., to develop the perfect overall plan and tell us what to do. It's very difficult to know when we're not experts. Just keep loving the kid and following your gut feeling. You sound like a great parent.
VermontCP and JellyRJFan, thanks for your responses.
Vermont...I'm curious about your son. We've debated about if now is the right time or not - he's about to turn 12 and hasn't gone through his growth spurt yet.
Our surgeon has said that it's better to do the surgery before the growth spurt as it will allow his bones and muscles to better handle the rapid growth that lies just ahead and he feels it's better to do a preventative surgery (i.e. now) than a restorative surgery (i.e. after the growth spurt) as by then, he may have gotten "worse" and there is a chance that it will effect the proper bone growth (meaning, without surgery, the spasticity will begin to contort the bones as he grows).
Thoughts on this? Did you consider doing the surgery earlier?
I had my lenthenings at 11 - I really should have one leg done further, but opted not to because I am petite (4'10) and have mild CP. Sounds like your son is fairly athletic so he will be use to the rigors of P/T. I had my surgery done out-patient and did not have any P/T - I wish that I had because my center of balance and gravity did change and I was fatiqued for a long time. Another consideration is also pain-managment. After the surgery is very painful as the tendons contract. I also lost alot of tone in my legs, even 18 years later, I see the difference. I did need to have the surgery done, but I think that there have been advancements that were not there at the time.
I did learn how to ride horses (as a form of therapy) and that was pretty neat. I don't think I would have had the opportunity to do so otherwise.
I am a 21 year-old with spastic hemiplemgia(mild). I had the same sirgery at duPont when I was thirteen. The results were pleasing. I was very active in dance like your son is in his interests, and I found it easier to recover because of it. I only recently (in May of 2006) underwent a calcaneal lengthening and gastroc recession. In the future due to growth, your son may have to have the gastroc recession if the msckes get tighter. Does you son see the orthopedists at duPont? I only recently was released from the care of an ortho there because I'm 21 and now see a neuro-orthopedist at Penn in Philly.
I guess different doctors have different philosophies on this. My son's orthopedist is quite conservative. He thinks the big issue about doing surgery too soon is the risk that the adolescent growth spurt will tense the legs up again, making a second surgery necessary. Given that the surgery leaves some permanent weakness, a second surgery is to be avoided if at all possible. His attitude is that you let the kid get into his growth spurt, monitor the increasing tightness or crouch (using botox, etc., to keep him as loose as possible) and do the surgery as late as you can so that the results will carry through the rest of his growth period. What you don't want is for him to have it too soon and then have to have it again. Our son's surgery was done at 14, when he was probably about half-way through his growth spurt. It worked out well.