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Old 08-04-2011, 05:54 PM
sueham sueham is offline
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Default Surgery

Hi, just found out last week my 15 year old son needs surgery for a 65 degree curve. Gotta say I was pretty shocked and upset, we only noticed something was wrong in January, how we didn't notice it before then is beyond us. He doesn't seem too bothered about it at all at this stage, hard to tell though with 15 year olds. Next step is an MRI then another appt with the surgeon. It's great to read of people's experiences on this forum, has helped a lot.
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Old 09-04-2011, 10:01 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Surgery

Hi sueham and welcome to the forum. Don't be upset about not noticing the curve earlier. This can happen. It is not usually until the child is having problems with another health issue that it gets picked up. On another scoliosis forum that i am a member of, many parents have mentioned the same thing. If you have any questions, please ask. There are many wonderful people on here, each with a unique experience regarding scoliosis. Our experiences, along with your surgeon/doctor, may help you and your son to have a less stressful journey.
Best wishes.
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Old 10-04-2011, 07:39 PM
Dom's mum Dom's mum is offline
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Default Re: Surgery

Hi Sueham,
Welcome but like others on the forum I wish you didn't have the need to be here. Our 15 year old Dominic had surgery last November so I know a lot of what you are feeling. Like you I didn't notice it until it was quite severe, he came out one summer night in boxer shorts and I was in disbelief when I looked at him. He had no idea either and wasn't experiencing any pain. What a rollercoaster life then became!
Please don't hesitate to private message me if you have questions and Dom would probably be happy to talk to your son at some stage if he wishes.
Annette
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Old 11-04-2011, 04:18 PM
sueham sueham is offline
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Default Re: Surgery

Thanks both so much for your messages. Annette I'd been reading of your experiences, I'd taken an interest because I think Dom was the only other boy I'd come across, also being the same age. Same thing, Jake had no pain either, wasn't until he'd been to the beach one day and I told him to take his sandy rashie off before coming inside, even then it was my daughter who noticed his hip "poked out". It's like one minute everything's fine and you don't even think to appreciate it, the next this, and you can't stop thinking/stressing about it. Anyway, our next appt is 18/5, will keep posting, seems to help speaking to people who know what you're going through. How is Dom going?
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Old 13-04-2011, 10:54 AM
Angela Angela is offline
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Default Re: Surgery

Hi sueham,
Welcome to the forum, I only recently joined myself. We also didn't notice that our daughter, Cate had scoliosis until about 12 months ago she came home from ballet and said that her ballet teacher noticed it. I made an appointment to see our GP who referred us to an orthopaedic specialist (who wasn't paediatric) but looked at her and her xrays and said she had a thoracic curve of 35 deg at that stage. We were then referred to the specialist we are now seeing and by the time we saw him in Nov the curve has progressed to over 50 deg. I was shocked at how quickly this had happened and agreed that surgery was the only option. She was the same as your son and had no pain, until about 2 weeks before the surgery she said her back was starting to ache if she stood up for too long. So she had the surgery 5 weeks ago, from T5-L1, everything went really. She also had ribs removed and this is what is giving her the most problems with pain at the moment. She also had a lumbar curve which the specialist hoped would correct itself, so we will be seeing him next week for post operative review.
I really understand what you are going through at the moment, it is a very stressful time, but there are people here you can talk to. I wish I had joined this forum earlier so I could have shared our experiences when Cate was in hospital. Anyway keep posting so we know how you and your son are going. Also as Dom's mum suggested in her reply, you can also send me a private message if you need someone else to talk to.
What state do you live in?
Take care,
Angela.
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Old 13-04-2011, 11:08 AM
Dom's mum Dom's mum is offline
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Hi Sueham,
As most will say the waiting is the worst. On the one hand you don't want to rush them into surgery but on the other you want them to be okay. I know as a mum there can be a lot of sleepless nights. How is your son coping? Dom kept a lot to himself and then would be ready for a big talk and questions. He is going really well now just getting frustrated at not being able to do things. We are both getting a little anxious as we have chest surgeon appointment in Sydney next Monday and spinal checkup Tuesday (we live in Newcastle). He is hoping his x-rays will show wonderful results with bone graft growth so he can get back into activities!
Angela, I am so glad Cate is doing well. Must be so much more to recover from when they remove some rib. Good she has the school holidays now to give her a bit more recovery time.
Annette
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Old 13-04-2011, 09:24 PM
sueham sueham is offline
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Default Re: Surgery

Hi Angela & Annette
Good to hear Cate is doing well after her surgery, shame about the pain re the rib though, is that due to the way they did the surgery? We got a letter from the surgeon saying Jake's lumbar curve will warrant anterior fusion most likely from T11 to L2. This is all yet to be confirmed though after the MRI and further x-rays.
Annette, good luck and let us know how check ups go next week.
Jake is coping remarkably well so far, doesn't seem to even think about it, the worst part for him he says is the 6 weeks off school stuck at home with mum & dad! Having said that it's hard to tell with 15 year old boys, they don't exactly talk about their feelings much!
Did you stay with your kids in hospital? Is that expected at their age? Also is the waiting while they're in surgery horrendous?
We are in Adelaide.
Thanks, Sue
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Old 23-04-2011, 11:09 AM
purpletrish28 purpletrish28 is offline
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Default Re: Surgery

We found out that our daughter Jessica, 14, has a lumbar curve of 50o and thoracic curve of 48o - but she refuses surgery. We have got second opinions and are trying a special back brace from America to try and stop curve from progressing and maybe even correct it a bit. I am struggling with doing the right thing as she is adament that she will try anything but surgery and I don't want to go against her wishes and sign her up. I myself have scoliosis and have managed for 20 years - although my curves are not as extreme - 27/35 at last xray 20yrs ago. I guess when she sees me with the same condition she feels that there is hope outside of surgery. Are we doing the right thing?
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Old 23-04-2011, 05:58 PM
Jen Jen is offline
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Default Re: Surgery

Hi purpletrish. My scoliosis was diagnosed at age 13 and I too, refused surgery (thank goodness I did though, because it was horrific then!) I waited until I was nearly 58 and though my curve didn't progress much until I was 50ish, it then began to progress rapidly. This seems to be a common story.

Anyway, my opinion is from my own experience and from my reading, that the younger the patient has the surgery, the better the correction, the fewer the complications and and the easier the recovery. Kids recover so well, it's amazing. Having said that, at almost 58, I also recovered well and I am now pain-free and my curve progression is arrested for life (hopefully!)

The longer you leave it, the more likely there will be other health issues which make the surgery more difficult. If she was my daughter, I think I would encourage her to go for it, however, it's not the end of the world if she doesn't have it for many years.

I don't know your age purpletrish, but it wouldn't hurt for you to have an x-ray to keep a check on your curve, because it's possible it too, will take off when you reach middle age. If it is progressing, you might save yourself a lot of pain and a bigger surgery, by having surgery earlier rather than later. Then again, not all curves progress and not all curves cause pain, but lots do.
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Old 23-04-2011, 08:21 PM
Christine Christine is offline
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Default Re: Surgery

Hi Purpletrish

I am waiting to see a scoliosis specialist in a week. I am 48 and my curve is now much worse, with a list of complications because of it. Honestly, I so wished I was able to have the surgery when I was younger. It has been a horrible 37 years (started when I was about 11ish). But as Jen said, the surgery nowadays is not a horrorshow like it was decades ago. Perhaps have Jessica spend some time looking at Youtube videos (simply search for scoliosis surgery) and many stories are there, all very positive and very much about young girls having the same condition with remarkable results. It may help her feel ok about the surgery.

And yes, get your own new set of xrays to see how your back is going. It has only been the last couple of years that mine has suddenly decided to really deteriorate faster and now causes lots of pain. I am sure it is middle age, lots of changes in the body.
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