Scoliosis - anyone had a young daughter diagnosed | ExpatWoman.com
 

Scoliosis - anyone had a young daughter diagnosed

95
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EW NEWBIE
Latest post on 14 October 2013 - 09:18
Hi Carrot Top - I was diagnosed with scoliosis at 11 (I'm now early 30s) and was monitored every 6 months with x-ray and MRI. I had 2 curves, one lower spine and one upper spine, each around 20 degrees and they balanced each other out for a long time. Unfortunately the lower curve worsened so that it was around 44 degrees by the time I was 16 and the spine and pelvis was rotating. I was starting to lose height, was looking pretty lopsided and I was suffering with back pain. I had spinal fusion surgery at 17 on the lower curve and then wore a brace for 6 months (gradually reducing the length of time I wore it for) to help the bone graft set in place. If it's possible to reduce the curve or avoid worsening through exercise and physio or bracing, then that's obviously the best option. I wasn't given any exercise / physio when I was diagnosed, and at that time the view seemed to be that braces didn't really work, but no doubt things have moved on in the last 20 years! I just wanted to reassure you though that although the surgery is major and hopefully won't be needed for your daughter, it's not necessarily a disaster and I am SO glad I had it. Mine was timed about 3 weeks before the school summer break when I was 17 - straight after my AS levels. I was in hospital around 2 weeks and they encourage you to get up and walking very quickly to retrain the muscles. I was back at school at the start of the Autumn term, so there was no interruption to schooling. I had a full recovery and my life is much better for having had the surgery - there's nothing I can't do, and without the surgery my life would have been a lot worse. I saw several consultants between 11 and 16 to get second and third opinions and I would definitely recommend seeing a couple of different specialists to make sure you are happy with the treatment options. A useful resource in case you haven't come across it is the Scoliosis Association UK [url=http://www.sauk.org.uk/'>link[/url'>
49
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EW NEWBIE
Latest post on 13 October 2013 - 21:20
You need to thank that school nurse! I didn't find out I had it until I was 32 when my back went out but remember being tested when I was younger, guess I didn't have such a good nurse. I am now 3.9 cm shorter with back and stomach core problems. There is a reason they check kids early - they have time to change the outcome. Like said, I would avoid surgery and you MUST do the exercise. I have now have more curve than your DD, but as her bones adjust, she will have other issues like bunions. PS- I will soon be the lady that walks crooked. My friends used to tease me that I leaned in photos even thou I was standing straight and now I know why!
48
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EW NEWBIE
Latest post on 13 October 2013 - 21:02
My son was diagnosed at 12, he was growing like a weed ( now 6 ' 2" at 13 ) with a 22 degree curvature. We took him to see Dr. Sinclair and then embarked on a heavy physio regime with Kim Robinson at the Dubai Physiotherapy etc on beach Rd. He did exercises almost everyday and did loads of swimming and within the year the curve has gone down now to 13 degrees. You have to catch it early, do the exercises and keep on top of it all. The kids need to realise that is 'their back' to take care of and it is not easy, as i am always asking, 'have you done your exercises? boring `i know. Get a second opinion, surgery is a big deal. That is the great thing about their age, the back is still growing, we can help shape it. Good luck.
81
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EW NEWBIE
Latest post on 13 October 2013 - 18:56
Hi Carrot Top, my daughter has been diagnosed with early onset scoliosis. She is 10 now and has been monitored by Dr Sinclair (pediatric orthopaedic surgeon) for several years now to ensure that the curve doesn't get worse. She had a full spinal MRI last year at citi and before that a few periodic xrays. I understand one critcal time is when major growth spurts happen ( ie just before and during puberty) .
1913
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EW EXPERT
Latest post on 13 October 2013 - 18:34
Got it if you want to remove you email address. Emailing you now.
1913
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EW EXPERT
Latest post on 13 October 2013 - 18:19
If you put your email up quickly I will note it down and then you can remove it.
34
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EW NEWBIE
Latest post on 13 October 2013 - 18:14
Ladies, thank you for all your replies, I really appreciate you taking the time to give me advice and information. This condition came completely out of blue, had no idea there was a problem. The school nurse is obviously very good at her job. I have appointments with another spine specialist, a MRI scan and a brace consultation and possible fitting. Plum2 - I would love the chance to speak or e-mail your sister, how would be best to get in contact with you. Thank you again to everyone. Happy Eid holidays.
1913
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EW EXPERT
Latest post on 13 October 2013 - 16:50
Bump for OP
1913
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EW EXPERT
Latest post on 13 October 2013 - 09:46
Carrot top Unfortunately my sister has two children with scoliosis. They have both been treated by the Royal Orthopaedic hospital in London. Her eldest was diagnosed quite late and got v bad v quickly. He had surgery at 16. Her younger son was diagnosed earlier and has been treated with braces that he wears 22-23 hours a day and these appear to be working. My sister has done an enormous amount of research into this and I know would be more than happy to speak to you. Let me know if you want me to put you in touch with her. <em>edited by plum2 on 13/10/2013</em>
2738
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EW EXPERT
Latest post on 13 October 2013 - 08:42
http://www.mayoclinic.com/health/scoliosis/DS00194/DSECTION=symptoms an interesting link, the Mayo clinic is world renowned for spinal problems.
2738
Posts
EW EXPERT
Latest post on 13 October 2013 - 08:35
Last week during the school medical, the nurse noticed by daughter (8 years old) had a mild curve in her spine and we should seek further medical advice. Within the next 24 hours, she has seen a spine specialist and been diagnosed as having scoliosis; her curve is already at 33 degrees. DD now needs to have a MRI scan and will need to wear a chest brace for the next few years, 23 hours a day. Surgery will be very likely in later years. Does anyone know of a family who had to deal with this situation? We are getting a second opinion, I understand she has scoliosis; it is the treatment I want to make sure we get right. We have been told it is 95% chance it will get worse. Thanks for any advice or guidance. Hiya, same story here, however we are taking a different route. Lil miss not only has scoliosis, but her spine curves forward in a curve over her pelvis. She has a right roller coaster going on! Decent size hump over her right shoulder. We were told surgery would be our only option. As they grow, with out treatment, remedial stuff..yes, it will get worse. Surgery is a last ditch option, and from what we have discovered, the brace *may* be needed as she hits the teens and has done most of her growing. In the mean time we see a chiropractor once very month/6 weeks...he has her xrays and he monitors and adjusts. Swim training, excellent as it exercises both sides of the body simultaneously; Yoga (Stotts in particular, if you can find it for kids) or Pilates. DON"T RUSH....research, take your time. Everyone is in too much of a hurry to do surgery here. Just out of interest have you taken her to the UK specialist center such as the NOH in Oxford for guidance? They are true miracle workers in many many fields.
74
Posts
EW NEWBIE
Latest post on 13 October 2013 - 05:18
My sister had a similar diagnosis at a slightly older age (around 10, I think). I'm not sure what the curvature degree was but she wore a fiberglass brace 23 hours a day until she stopped growing (around 15/16 years old). She too was told that she may need surgery if the brace didn't work. The brace started under her bust and went halfway down her hips. She wore it 23 hours a day and only took it off for showering and swimming (where the water supported her body). Fortunately, the brace worked and she didn't need surgery. She leads a perfectly normal, active life and runs, mountain hikes and skis regularly (she lives in Switzerland). This was back in the mid 80's to early 90's so I'm sure things have progressed massively since then. Good luck. I know it seems daunting. If it's any help, once my sister got used to wearing the brace, she just took it all in her stride and wearing it didn't seem to bother her at all. Also, about the keenness here to surgery - I agree. Drs here seem far to keen to operate. My osteo checked my back as my Dad also has a mild scoliosis. I have a mild curvature too (as do many, many people) but not enough to do anything about. Perfection is not always needed!
2322
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EW EXPERT
Latest post on 12 October 2013 - 23:31
Last week during the school medical, the nurse noticed by daughter (8 years old) had a mild curve in her spine and we should seek further medical advice. Within the next 24 hours, she has seen a spine specialist and been diagnosed as having scoliosis; her curve is already at 33 degrees. DD now needs to have a MRI scan and will need to wear a chest brace for the next few years, 23 hours a day. Surgery will be very likely in later years. Does anyone know of a family who had to deal with this situation? We are getting a second opinion, I understand she has scoliosis; it is the treatment I want to make sure we get right. We have been told it is 95% chance it will get worse. Thanks for any advice or guidance. Hiya, same story here, however we are taking a different route. Lil miss not only has scoliosis, but her spine curves forward in a curve over her pelvis. She has a right roller coaster going on! Decent size hump over her right shoulder. We were told surgery would be our only option. As they grow, with out treatment, remedial stuff..yes, it will get worse. Surgery is a last ditch option, and from what we have discovered, the brace *may* be needed as she hits the teens and has done most of her growing. In the mean time we see a chiropractor once very month/6 weeks...he has her xrays and he monitors and adjusts. Swim training, excellent as it exercises both sides of the body simultaneously; Yoga (Stotts in particular, if you can find it for kids) or Pilates. DON"T RUSH....research, take your time. Everyone is in too much of a hurry to do surgery here.
1601
Posts
EW EXPERT
Latest post on 12 October 2013 - 20:51
I Have mild scoliosis which was not diagnosed until I had an MRI in my late 40's. I was as healthy as a horse with slight back issues growing up but was always told ' growing pains '..... Being diagnosed early is the key and I must agree with Lolacat I would get her diagnosis/ severity confirmed at one of the top notch clinics as if you deal with it at an early age your results will be far better.I on the other hand am almost in a wheelchair with back issues, and many a doctor has said if it was caught earlier many of my issues would not have been as chronic as they are now. You are asking questions which is the best thing to do. All the best <em>edited by Nomad on 12/10/2013</em>
2738
Posts
EW EXPERT
Latest post on 12 October 2013 - 20:42
I just read an article today about a soloist (ballerina) who was diagnosed with Scoliosis as a child and was only allowed to take her back brace off for a bath and ballet as for 8 years. She is now one of the top up and coming soloists in the ballet world. Just to share that these things are sent to try us but where there is a will there is a way. I would always look for second and even third opinions, try looking to see if there are some forums that could help or organizations (UK or your home country) with more information. If you are from the UK look at the Nuffield Orthopedic Hospital in Oxford and go there for advice/diagnostics/treatment. They take NHS and private patients, worth every penny to get the right help. There is also GOSH. I've been in and out of orthopedic hospitals for many years with one of my children and seen incredible things done with spines etc. Good luck.
309
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EW EXPLORER
Latest post on 12 October 2013 - 20:09
Oh I'm so sorry - you must be so worried. My teenage daughter has mild scoliosis which doesn't require any surgery, so I can't offer any helpful advice I'm afraid. It's not terribly noticeable but she does get a sore back if she has to stand for prolonged periods of time. Hope you get the advice & support you need.
34
Posts
EW NEWBIE
Latest post on 12 October 2013 - 20:05
Last week during the school medical, the nurse noticed by daughter (8 years old) had a mild curve in her spine and we should seek further medical advice. Within the next 24 hours, she has seen a spine specialist and been diagnosed as having scoliosis; her curve is already at 33 degrees. DD now needs to have a MRI scan and will need to wear a chest brace for the next few years, 23 hours a day. Surgery will be very likely in later years. Does anyone know of a family who had to deal with this situation? We are getting a second opinion, I understand she has scoliosis; it is the treatment I want to make sure we get right. We have been told it is 95% chance it will get worse. Thanks for any advice or guidance.
 
 

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