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Old 27-01-2013, 08:18 AM
Jan Jan is offline
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Hi there, I am new to this forum. I do not have scoliosis, but my daughter who is 14 does. She has a lumbar curve of 46 degrees and thoracic of 30 something. It was only this summer that we noticed the asymmetry with increased curve of the waist on one side and not the other. Still a bit in shock at the degree of the curve on her first lot of XRays. We have been to see a specialist this week who was lovely, but really explained to us that if it progresses any more in the next 6 months, really the only option is surgery. My question is, for those who have not had surgery, how are you these days?
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Old 27-01-2013, 09:23 AM
Christine Christine is offline
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Hi Jan

Many of us here have had surgery ... I don't think there are many members on the forum who haven't. Hopefully someone who hasn't will pick up your question and reply.

I was 48 when I had my surgery, so had to live with scoliosis a loooong time.

It is usual to be diagnosed in the teens, some are told to wait and see, others are braced, some have surgery. When I was in my teens I was and told to wait and see, and it did progress over the years to a point where it was unbearable and I couldn't wait for surgery to happen. Mind you, that was about 35 years after diagnosis

The younger members on the forum who have had surgery would be a good reference point for you too. Spend some time reading others' posts ( I used to spend hours reading up when I was looking at having surgery! ) and their parents are also avid forum members.

It is awful to go through life with a deformity, and I would have loved to have my surgery in my teens. Mine was mid 30's thoracic and 20's lumbar, so just not quite bad enough at the time. But I had a revolting hump and prominent shoulder blade which made for a very sad existence.

So, from a perspective of what happens without surgery? For me, it was lots of shame, humiliation, sadness, pain and discomfort, self-consciousness, hating my body every minute of the day...not to mention the whole clothing thing was an endless nightmare! I could never get comfortable sitting or sleeping. One of the worst parts is the distraction i.e. knowing that I had this problem that was obviously getting worse over time, and wondering what will happen, will it finally be bad enough for surgery, will they say no and then I go into old age in a horrible twisted condition. It is a huge relief to finally have it fixed and I can get on with life. Albeit a little bit too late but I feel wonderful now.

The actual surgery is pretty huge, but also pretty darned amazing. My curves had progressed to 50 thoracic and 35 lumber at 48 years, so obviously getting worse. 50 degrees is the point that surgery is considered. I had two operations ... the second to remove the hump a bit more. I rather enjoyed the surgeries as the transformation from crooked to straight was like a dream come true.

Christine x
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Old 27-01-2013, 03:11 PM
Jen Jen is offline
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The thing to remember is, we're all different. Our progression doesn't follow the same path. But like Christine, I didn't have surgery until later in life, actually much later than Christine. I was almost 58. My scoliosis wasn't documented (I didn't see any doctors about it until 9 months before my surgery) so didn't have a record of my progression. Basically I went about life as if I didn't have scoliosis. It came as a shock when the pain set in but still, I put up with it another 8 years, still trying to ignore it. Finally I couldn't ignore it any more, it was getting disabling. At that point I wished I'd had surgery much younger.

However, I got through surgery very well and have what I consider an amazingly successful outcome! I've been very lucky.

So the point is, many of us get through most of our lives without the surgery and do very well, though not all of us. Some have no choice but to have surgery in their twenties, thirties or forties. Only today I read about a high school girl with a huge S curve, who had successful surgery: http://www.srs.org/patient_and_famil...es/caitlin.htm Just look at those curve numbers!
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Old 27-01-2013, 08:39 PM
Jan Jan is offline
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Thanks for your replies Jen and Christine. The thing that I am finding hard in considering surgery is that my daughter has no pain, lives a completely normal life, and does not have an obvious deformity, in fact no one would really notice unless they were really looking for it (even though her Cobb angle is 46degrees in the lumbar spine). I am hoping that she may be able to avoid surgery but perhaps that might mean that she has big issues when she is older, then again, she could have big issues related to the surgery too. At this stage, she will have another lot of XRays in 6 months so we can assess if the curve is progressing further or stable, and then take it from there.
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Old 28-01-2013, 09:19 PM
Veronica Veronica is offline
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Hi Jan,
My nearly 13 year old daughter was formally diagnosed with scoliosis in August last year. We were fortunate enough to have a great physio pick it up when she was small so we were expecting to see a change sometime. She has a 36 degree curve (lower back, not sure of the technical term). It was recommended she wear a brace which we've had since October last year. I'd love to say its been smooth sailing but we are on our second brace 1st one wasn't quite right) & before Christmas I was on weekly visits to the city for the orthatist to make adjustments. We too were told its a waiting game for X-rays in six months time. Our daughter is non-verbal & seems to be coping with the brace for the most part.
I hope all goes well for your daughter & that she has little or no progression of her curves when your next off for X-rays.
Veronica
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Old 29-01-2013, 09:28 PM
jane jane is offline
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Hi Jan, I went through what you are going through because my daughter had no pain at all and was living a very normal life. However, because she had a thoracic curve the one thing that was being impacted was her respiration and as a fit swimmer she was not able to get such deep breaths as she had previously. When we had this checked out the doctor did not even find her scoliosis despite what would proably have been at that stage at least a 50 degree curve. Then 3 months later we took her to another GP who had an xray done. Our local hospital measured her biggest curve at 50 degrees at that stage. 8 weeks later we saw the specialist who measured it at 63 degrees. We do not know if the curve had increased that quickly or if the intial measurement was not accurate...but I do know that some curves can progress quickly . My daughter had surgery in June 2012 and 7 months down the track she is riding 15kms easily on her bike, swimming 200m butterfly and remarking that she can now breathe properly again. Her curve was corrected by 42 degrees and the surgeon we had is amazing. My husband struggled with the thought of the surgery but I struggled more with them telling me the waiting list was so long that they would put her in a brace for along time, a brace that wouldn't fix it and might not even contain it. That is why we went interstate for surgery. She has been medication free since 5 weeks post surgery. As the other members have said - read the stories on this forum and that will really help you and know that we all are here to support you in any way we can.
Take care,
Jane
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Old 02-02-2013, 04:46 PM
Jan Jan is offline
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Thank you Jane, I really appreciate your comments. I know we will be very anxious to see if the curve has progressed at the next set of XRays which is not until July. I hope your daughter continues to make fabulous progress and that she continues to lead a healthy life.
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Old 03-02-2013, 09:44 AM
staying positive staying positive is offline
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Hi Jan, I too have a daughter just diagnosed with scoliosis and we are probably going through a similar angst to you. Our daughter is a competitive athlete and very active and this has all been a big shock to us especially as she has been told she will have to give up running. She does not want surgery, what 16 year old would? mind you, bracing is not appealing to her either. We are hopefull that bracing will reduce her curves (just over 50 thoracic and 30 lower) at least until she finishes growing but I am not sure what the best thing is for her. Xrays show she has a lot of growing to do and we do not want to halt that with spinal fusion. We are confused and, like all parents feel desperate to make the right decision which will have a minimal impact on her with maximum results.
I sincerely wish everyone on this forum all the best with their journey, any guidance from a wise person who has been through this would be most appreciated.
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Old 10-02-2013, 08:11 AM
Jan Jan is offline
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Yes, it is all quite confusing really. Were you told why she needed to give up running? I am only asking as our specialist said to keep up with normal sport and exercise, but I do have some concern about running and its impact on the curve. We are also going to start her with the SCROTH physio to see if that might help to halt the curve, although our specialist doesn't think it will help! There is a long wait to get in to the physio though as there are very few physios specifically working with scoliosis.
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Old 06-03-2014, 01:02 PM
cara cara is offline
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I know I'm a bit late to the discussion but I was in a similar boat. I was diagnosed at 11 with a 38deg curve but no real pain. I was told they normally operate at 40deg but would try bracing instead in the hope it could be maintained until I'd stopped growing & only need one surgery (or none if it stabilised). I stopped wearing my brace at 16yrs old & was finally operated on at 18yrs with a 78deg curve. It wasn't giving me bad pains which is why they were able to hold off so long. I was big into athletics & netball the whole time (encouraged to do sport as it would strengthen the muscles) and only had to give up gymnastics or anything involving flexing the bones.

I'm now 29 and so so so glad I had the surgery (I'm now about 40deg). I can't imagine having to worry about it throughout my adult life & wonder if its too late & what I'll be like as an old lady all hunched over. We tried every single possible alternative therapy with my mum trying to avoid surgery (had appointments 2-3 every week it seemed).

Hope this helped!
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