Fusion to sacrum and loss of mobility??? Help

[Minkman]

Hi. My 13 yo son has surgery Monady and we have to decide whether he gets fused to sacrum or to L3. His L4 L5 can't support screws so we must decide to go above or below main area of curve. He has cong scoliosis with a 85 degree curve in the lumbar area. He plays high level soccer and other sports and wants to continue. Can anyone tell me how much mobility/flexibilty he'll lose if he gets fused to S1 from T10? Or should he get the smaller surgery just to L3 and probably have to get another surgery in the future?

Thanks

PS he had surgery when he was 2 and it was corrected to about 35 degrees from 70. But it's progressed to 85 now.

[leahdragonfly]

Hi there,

sounds like a tough decision...are the doctors advising one vs the other, or are they completely leaving it up to you?

I had surgery to fuse T8-sacrum about two years ago (ate age 43). It is a very significant loss of mobility, and I personally think it would be extremely hard for an active 13 y/o to cope with. I can't imagine him being able to play high-level soccer after that, but it's hard to say. Lots of people here have posted various opinions about their loss of mobility with fusion. Most are in their 40's at least, and say they find other ways to do almost all of the things they want to do. For me, yes I can still do most of what I want to do, but some things are not easy now (such as picking stuff up off the floor) and I admit I am frustrated by my loss of mobility.

I wonder if you chose the more conservative fusion how many years he would have some added mobility until extending the fusion became necessary. I could really be quite a few, depending on the circumstances. That would be a good question for the surgeon. I really think that to just fuse to sacrum now, to try and save another surgery down the line, might result in a very unhappy boy.

This is all just my opinion, and I hope you don't mind my candor. Best of luck to you and your son in his upcoming surgery. Please let us know how things go.

[LindaRacine]

Hi...

I was fused to T4-L3 20 years ago, and then had my fusion extended to the sacrum almost 2 years ago. I can tell you that there was a big difference in flexibility between the 2 surgeries for me. If it were my decision, I think I'd try to judge the surgeon's preference, though that's often impossible. I'm guessing that your son's risk of needing fusion to the sacrum eventually is super high (because of his issues at L4-5). If he's willing to be fused to L3, knowing that it's almost a certainty that he'll need additional fusion at some point in the future, I'd definitely respect his choice.

Sorry you're having to go through this.

Regards,
Linda

[jrnyc]

what a very tough thing to have to decide...

having worked with kids of all ages, first as teacher and then
as social worker, i agree with previous posts here...especially
Gayle's comment about having an unhappy boy if he feels lack of
mobility with fusion to sacrum....a child so used to playing without
restriction would have quite an adjustment to make...as compared to
an older person, even in their 20's or 30's, who is not involved very much in
the way of contact or team sports...
if you read many of the posts on forum about surgery for kids
and teens, you might notice how hard surgeons try to maintain
the least fusion possible in lumbar area...when there is a choice,
when it isn't a sure thing that the entire lumbar must be fused...

good luck in whatever you decide...
jess

[Kat3573]

I'm little older than 13 and I had surgery from T4-L1. Recently although I'm still very restricted I disobey my surgeon everynow and then.... I feel restricted sometimes and I would be very pissed off if I had to be fused to the sacram believe me I'm fusing up to L1 and I'm pisses off that I had to be fused in the lumbar(but I can't complain. I'm happy wen I had the surgery because if I had it for the original date then I probabaly would be fused to L2 that's what my surgeon said so I was boarder line so I'm grateful that I had it sooner) honestly, IMO I would say go to L3 let the poor kid have a childhood. I would want to be able to bend down and play sports. You never know may be he won't need another surgery. May be during surgery his body change in a way . Idk! All I'm saying his dont restrict him now. YOu never know what could happen. It's no big shOck if u find out he needs another surgery later but at least let him live his teen years more flexibility. That's what I would do. Let him feel a little normal for a while. I'm sooo sorry ur going through this. I'm upset that I have 1 lumabr vertebrae taken away I can't imagine having all of my lumbar vertebras gone! Just take a chance! You never know what could happen!

[Kayde]

After 2 1/2 years of mobility prioblems and shoulder casulatinb I have been left with not many options. The surgeon has said rod removal is my only option. Obviously this is the last thing I wanted. But I can't lose use of my arms and being in constant pain and trouble traveling, driving a car and just everyday social activities was not something I even considered. If the bones are fused enough sr says can get back 90 percent of my movement without pain. Risk of curvc coming back slightly is a concern. But losing movement a bigger one. I guess it depends on how restricted and how much pain. It is a hard decision to make. But pain meds and all the complications will determine what should be considered. I did therapy for a year including water therapy and professionals all suggested t
His was the way. I have not had done yet as they are looking into doing shoulders again at the same time. My only suggestion is ask sooner and don't wait until he gets like me. Everyone reacts differently. Even with a perfect surgery doesn't mean it was perfect for him.