View Full Version : Similar Experiences? 5 year old boy
3rd April 2005, 07:42 PM
Hello everyone. I have a 5 year old boy with 2 curves. The top one progressed from 29 to 37 degrees in 3 months. He's now in a brace, but surgery seems inevitable. I've heard such a wide range of stories - from not bad too absolute horror. I've also heard about ongoing surgeries every 6 months until he stops growing. Has anyone had any similar experiences? We're just trying to learn what to expect. There doesn't seem to be any information out there for boys his age - it all seems to focus on spinal fusion for late teens.
3rd April 2005, 08:13 PM
Hi Chris and welcome.
I guess the treatment your boy will receive depends on whether it's idiopathic or congenital.Where is he being treated and what does your surgeon think?I can't imagine that they'd consider fusion surgery for one so young.new technologies seem to be coming to the fore like vertebral body stapling, or growth rods.We have a few articles in this forum about them which you've probably seen by now.We'll do all possible to point you in the right direction to find the information you require.
3rd April 2005, 10:17 PM
Hi Sins: Thanks for your reply. He has an idiopathic case. The surgeon is talking about the growth rods, if the brace does not stop the progression.
He mentioned additional operations each 6 or 9 months.
I understand the first surgery involves about a week in the hospital, and about 2 months for recovery.
I'm wondering if the subsequent surgeries are just as bad, or if the hospital stay and recovery might be shorter. If every surgery involves a couple month recovery, that sounds like a horrible life!
4th April 2005, 12:58 AM
I had infantile idiopathic scoliosis, first diagnosed with a 62 degree /40 degree double curve when I was 6 months old. I wore plaster bodycasts and braces throughout my childhood until I was ten, when I had my thoracic curve fused - it had reached 75 degrees by then. I was lucky in that the braces and casts managed to prevent my curve from progressing too much until then. I eventually had my lumbar curve fused at the age of 18. I'm nearly 30 now.
I'm afraid I don't know much about growth rods, as they weren't available when I was a child, but they appear to be a great alternative to very early fusion and the children I have met who have them seemed to be very happy and comfortable with them.
Anyway, welcome to SSO! I'm glad you've found us :)
4th April 2005, 04:33 AM
Thank you for your response, Toni! I hope your case has turned out as well as possible!
I've spent many hours on the internet, and haven't really found any information specific to my son's situation. Namely, what are these on-going surgeries all about?
Our next checkup is in June. Hopefully the brace can halt the progression, but I have no clue how likely that is.
Thank you to all who respond - it's very meaningful to our family.
4th April 2005, 01:06 PM
We have some articles Chris here on growth rods.There's also a DVD doing the rounds on the site here.It's called extreme surgery and included in it is the case of a 6 year old girl in arkansas, who successfully underwent the Growth rod procedure.The rods look very like the double rod systems you see in our gallery, but the spine is not fused.The central parts of the rods can be extended by the surgeron making a small incision in the back and using tools to extend the the growth areas carefully.I don't believe the incision is big and only a small part of the initial incision is opened.One of our members Kimberly,herself an infantile scoliosis patient has a copy of the disc and when she comes back from vacation she can send it to you.I take it you are US based?Having seen the surgery,it's not really as dramatic as it's made out to be.Sealy is also US based and has lots of contacts with parents of children in your situation so just give it some time and we'll dig up the information you need.Hopefully the brace will hold the curve as it's still preferable to surgery.But if the curve advances, definitely consider the growing rods and check up about other possible techniques such as vertebral body stapling and raise them with your surgeon.
4th April 2005, 01:27 PM
Welcome to SSO. I have no experience of the surgery you mention, but I suspect that the on going surgeries are to extend the growth rods and therefore would not be as severe as the initial surgery. I am sure some of the others will ahve nore infor for you.
4th April 2005, 01:51 PM
Last week I actually met some children who were in hospital having their growth rods lengthened. One little girl who had her rod lengthened that day was up and around, climbing all over her bed, with just a small dressing on her back to show that she'd had any surgery at all! She certainly didn't appear to be in any pain at all. Her mum said that she had the rods lengthened every 6-9 months, and that she was in hospital overnight each time - she never had to stay in any longer than that.
I will get some more photos of myself posted in the gallery here as the cosmetic correction I've had is extremely good, even though I had my first surgery nearly 20 years ago! It seems to me that the important thing with infantile scoliosis is not necessarily the size of the curve, but whether they can hold that curve for long enough to give the child plenty of time to grow. You'd think that a 6 month old baby with a 65 degree curve would face a scary future, but it wasn't really a problem for me as they managed to hold the curve for nearly ten years without it deteriorating.
5th April 2005, 02:19 AM
Sins, ( :soapbox: )
I'm in Canada ! :P
I posted an article on juvenile scoliosis in a another thread - I think it was the one on Emmeline.
Braces are usually effective for curves less than 40 or 45 degrees. Your son is now five years old ? The effectiveness of braces is dependent on so many different variables, that it's hard to predict success. Compliance is very important, so is the skill of the orthotist. I wouldn't worry too much at this point. As Toni pointed out, there are more aggressive ways of controlling scoliosis besides a brace. I'm surprised that your doctor has given you the impression that surgery is inevitable.
5th April 2005, 02:24 AM
Thank you very much for your responses.
Our surgeon thinks the surgery is likely, but not inevitable. I guess I'm drawing that conclusion from the 9 degree progression in 3 months.
Our son is doing great with the brace. The orthodist gave us a list of potential problems at the beginning - sleeplessness, discomfort, skin problems, etc. However, our son put the brace on, never complained once, never had any discomfort or anything. It's been ideal this first week.
We've been able to tighten the straps about 2 inches, and he's been wearing it without complaint for all but about 20 minutes a day.
Thank you for your time to respond!
5th April 2005, 10:44 AM
OOps, sorry Sealy.There's a minor geographical difference now I think about it. :idiot: :oops:
5th April 2005, 02:34 PM
Thanks for giving me a good chuckle this morning ! :-D
5th April 2005, 07:53 PM
Wow - Chris, that's very good to hear. If your son can tolerate it that well, there's every reason why it should be very effective and hold the curve extremely well.
26th April 2005, 02:36 AM
My son has been doing very well with his brace for the past month or so.
No problems to report - skin has been fine, comfort has been fine.
We're still struggling with his pants falling down! :-)
We'll be back in June for an update, and hopefully surgery will at least be delayed.
He has been playing soccer and still rough-housing like a 5-year old will.
Thanks to all for your support!
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