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Scoliosis 

Introduction 

Scoliosis: Rachel's story

Rachel was diagnosed with scoliosis, a curvature of the spine, when she was 11. She describes how it progressed throughout her childhood, the treatments she had and where she found support.

Scoliosis is an abnormal curvature of the spine to one side. In people with the condition, the spine bends either to the left or right. The curvature in the spine can vary from being slight to severe.

The bend can occur at any point along the spine, from the top to the bottom. However, the most common regions to be affected by scoliosis are:

  • the chest area (thoracic scoliosis)
  • the lower part of the back (lumbar scoliosis)

In about 80% of scoliosis cases, the cause is unknown. This is known as idiopathic.

Who is affected by scoliosis?

In the UK, scoliosis affects three to four children out of every 1,000. The condition can develop at any time during childhood and adolescence (the teenage years). Scoliosis is more common in girls than boys and often occurs at the start of adolescence.
 

Outlook

Treatment is not required in about 90% of cases of scoliosis because the condition corrects itself as the child grows.

Most of the remaining 10% of cases can be successfully treated using a back brace to prevent further curvature. Approximately 3 out of every 1,000 children with scoliosis will need surgical treatment.

Scoliosis is usually not serious, but treatment is essential. Left untreated, the curvature of the spine can get worse and cause damage to the spine, chest, pelvis, heart and lungs.

  • show glossary terms
Lungs
Lungs are a pair of organs in the chest that control breathing. They remove carbon dioxide from the blood and replace it with oxygen.
Spine
The spine supports the skeleton and surrounds and protects the delicate spinal cord and nerves. It is made up of 33 bones called the vertebrae.

Last reviewed: 29/03/2010

Next review due: 29/03/2012

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anamey said on 22 April 2011

hi there , I was diagnosed with scoliosis when I was 12 for which I had corrective surgery on both ribs and spine at the Royal National Orthopedic in 2002 at the age of 14 its been 9years since my surgery and I have metal rods with screws to support my spine. Recently I exceeded 90 degree movement as my leg reached to my neck causing pain in my neck and my left shoulder. The pain feels like someone has punched me and it feel inflamed. Is this pain temp or can there be a possibility that my screws of the rod has caused damage to my nerves ?

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jojoch11 said on 16 March 2011

My scoliosis was S Shaped so very bad, but I would like to thank all the Drs, Nurses and all other staff at the Royal Orthopaedic Hospital, Northfield, Birmingham for all the treatment that I've received over the past 20 years if it weren't for them I don't know what would of happened.

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jojoch11 said on 16 March 2011

I am now 20 and the only person in my family to have scoliosis. I found out I had scoliosis when I was 18months old which I was to young to understand until I got older and drs and parents told me what was wrong. I handled it really well did miss alot of time off school but it was all worth it to make myself better I had operations every 6 months and had final one on my spine at 15 yrs then one final one on my rib cage at 17 yrs.
I live a normal young womans life i'm in a relationship and I have support from all my family.
If anyone found out they had scoliosis I would say take it one step at a time weigh up all your options and always ask questions and to see xrays.
I don't know many people in my area who have scoliosis the only people I see with it was when I was in hospital.
It may be a painful and long winded thing in your life but in the long run its best to get treated for a better life in adulthood.
I may only be 4ft 9inches due to scoliosis but I get great support and live a great life.

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AmyM1990 said on 11 March 2011

I'm 20, and noticed that my spine wasn't 'normal' when I was 14/15, never thought nothing much about it to be honest. Was watching a programme on tele and a woman had a moderate curve to her spine, and it looked like mine, but not as bad as mine.
I haven't been diagnosed, I am worried to go to the doctors to be honest.
I'm going to though after seeing the programme, she had surgery, would that maybe be my only option, as I'm 20, and effectively fully grown now?

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Stacey1590 said on 10 March 2011

I was diagnosed with scoliosis when I was eleven, and wore a brace for three years, as well as a built up shoe because my legs were different lengths.
I had surgery to fuse the bottom half of my spine at Hinchingbrooke Hospital in November 2004, when I was 14.
I never really suffered any pain prior to surgery just the occasional backache. I was in hospital for 10 days due to some complications with my breathing and had almost three months off school, not ideal when you are doing your GCSE's!
My mum has mild scoliosis and so does my nan, her mum did too, and there is american evidence to prove that it can be genetic.
More needs to be done to raise awareness of scoliosis. My mum checks my younger sisters back almost monthly to see if there is any curve, and I am currently slightly concerned that my boyfriend's five year old niece may have scoliosis, or end up with scoliosis, as she has had to use crutches since she learnt to walk, which leaves her permanently leaning over to one side, and overcompensation and the differing muscle tones made my scoliosis so bad.
Good luck to anyone who is on the waiting list or recovering from surgery. I find that it hasn't stopped me from doing anything, and it shouldn't stop you either.

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Dancer2 said on 01 February 2011

Be positive, it's easy to help yourself.
I am now 58 and was diagnosed, at age 11, with moderate lumbar scoliosis by a secialist at the Royal Orthopoedic Hosp. He thought that I had probably been born with scoliosis: they monitored me annually until I was 16 and felt that my spine was probably fairly stable and that surgery would not be nec.essary. This opinion was repeated by another consultant about 15 years ago.
I have suffered from moderate backache throughout my life and since the age of about 40, I've been careful to always use good-quality seating and a lumbar-support pad tailored to my personal shape!
I find that leaning/stretching forward and carrying heavy shopping presents the most risk of painful injury (usually taking some weeks to recover) so I avoid gardening and I let Hubby do the carrying!
The best way that I have found to avoid problems is to keep my back as strong and supple as I can..........believe me I don't like exercise, but the right kind really makes all the difference. Swimming is brilliant (though boring) but dancing is the best because not only do you exercise without realising, it does such a lot to improve posture and stretch your spine upward (my height has actually increased by 2 cms). This helps to relieve the pressure on the compressed vertebrae and therefore reduce pain.
Try it, (or swimming) it really works. Good luck.

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Sam_02 said on 21 November 2010

I was diagnosed with Idiopathic scoliosis when I was 13/14 and had surgery when I was 17. Everything during surgery went well, even with my heart and weight problems. I am now 25, I had Kass rods and so far have had no issues with back pain or problems with flexibility. My sister and cousins also have scoliosis.
My only issue is that prior to my diagnosis is that I had never heard of scoliosis and nore had anyone that I know. I feel that as in the US there should be mandatory tests in school for this condition as it is a quick simple test that could save many adolescents from surgery.

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linda may said on 18 August 2010

i am 51yrs old and was born with scoliosis,i was in hospital for a full yr at the age of 3,they operated on me and i had to wear a full body brace all the time.i had to learn to walk still suffering from the scoliosis.i had a mri scan 10 yrs ago which shows that no surgery will benefit me at all,the neurosurgeon told me not to let anyone operate as i would probably end up in a wheelchair.i also have breathing difficulties due to the scholiosis,which at night as my lungs crush under my ribcage,it causes my oxygen levels to drop so i have been put on a bipap machine at night which keeps my airways open and helps me to breath better,i am alot of medication cos the pain gets really unbearable at times,i do get very depressed,and very tired,but the staff at doncaster royal imfirmry have been so understanding,and are always there to listen .i do have to go every few months for check ups,on my breathing.and the neurologist comes to see me from sheffield hospital twice a yr to see if my scholiosis is getting any worse.my growth stopped when i was 4ft 8in ,due to the scholiosis,but i just think it could have been far worse,at least i can walk so far.

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mrsmagoo1974 said on 17 August 2010

i had an epidural 9 years ago my spine was fine then 2 years later they said i had a bad curve in my spine sinse then ive had a number of problems including back ache

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Donna Lou said on 08 July 2010

Ive had lumbar scoliosis since i was 13 and now im 21 ive not needed an operation, as i have been quite mobile and do a lot of walking through a sports course. Only now im working im in a bit more pain than usual through the type of chair im using i normally have an orthapedic chair but not been able to get hold of one since moved over to Manchester.
Hopefully somthing will come of it lets see.

I feel im one of the lucky ones, i feel for those who's had operations, GOODLUCK to you all.

Donna Lou

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drewzie said on 29 June 2010

Im 13 and have been diagnosed with scoliosis resently at a dancing (ballet) audition. I have both lumar and thoracic scoliosis and do have alot of pain especailly sitting on plastic uncomfortable chairs at school. I have seen a specialist who has told me to think of other careers other than dancing as my scoliosis may get worse as i finish growing this upset me alot! I dont want surgery because of my dancing (by the way im very good second best ballet dancer in enlgand) but i was offered a brace which i hopefully will be getting after my MRI scan in october. I do think it is a serious condition and i do feel deeply for the people that have it worse than me x

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jm700 said on 23 June 2010

I was diagnosed in 2007. I was in so much pain at times that I had to sit or lie down and do something to take my mind off of it. I had to wait 18 months for my surgery date. I was really scared and nervous. The surgery lasted 7 hours which felt like 5 minutes to me but a lifetime to my family. I was in the HDU (High Dependency Unit) for a day or two then I was moved on to the ward. At this time I was only 15 years old and now I'm coming up to 17 so it was pretty recent obviously. A week later, I was home again but out of school for a month.

Could I take this opportunity to thank my surgeon and consultant. They could have saved my life because Scoliosis, if left unattended, could result in your lungs and heart being damaged. I am glad that my Scoliosis was noticed and operated on. So, thank you once again.

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lozmw84 said on 14 May 2010

I have diagnosed with thoracic and lumbar scoliosis. I first went to my GP complaining of lower back pain when I was 15, who told my parents that I obviously just wanted time off school! i eventually went to a private physiotherapist who advised me of the condition and was finally sent for x-rays. I missed six months of school in an important year, i missed my friends so much. Thankfully I have a very supportive family and I still managed to do 11 GCSEs. I moved overseas for a few years when i was 19 and the heat really helped. Since coming home my back has become much worse again and i am struggling with my job. I am living on paracetamol and ibuprofen as i can't work when i take the stronger pain killers. I am now under Lincoln hospital awaiting my MRI results. I am so grateful to have such a loving and supportive family. my sister had the operation to straighten her spine a few years ago and is now doing great...she recommends it everyone. Best wishes to your daughter Joanne Rennie, she must be a very brave little girl! good luck to you all xxx

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laurabaker1 said on 29 April 2010

I was diagnosed with ideopathic scoliosis in thoracic and lumbar regions at 14. I had two curves that were at 53 and 45 degrees, and as I live in Germany, their first step was for me to commit to physiotherapy weekly, which I did for 2 years (and went to a rehabiliation facility for a month for intensive physiotherapy) which didn't help at all as I had pretty much stopped growing and this makes it much harder to reduce the extent of the curvatures. I was then referred to the Werner-Wicker-Klinik, a hospital that specialises in spinal fusion surgery, and they told me that my curvatures were too far progressed and that I needed the surgery soon to prevent it getting much worse. I had the surgery the following August and I was in hospital for around 3-4 weeks. It was very painful afterwards. I also had to wear a back brace for 6 months afterwards & go for regular check ups.
Although I am now pretty much fine and only have small curvatures, I still believe that if I had been more aware of the condition I could have hit it earlier on and improved it through physiotherapy rather than having the surgery as it does create some restrictions; 8 months on now and I still experience frequent pain, I can't bend my torso at all which limits activities sometimes, I have a significant scar on my back and one on my hip and I am still not comfortable in sporting activities that I did before the surgery.
Anyone considering having the surgery, I would urge you to seriously consider it and try the other options such as bracing & physiotherapy first. I had tried a plastic brace before my operation though, and it was extremely uncomfortable and attracted attention as it involved metal bars lying across my chest. Still, the surgery was a lot worse than I had expected! It is beneficial though and I am glad to have had it.
I don't know if you can do this on here but if anyone has any questions about the surgery/physiotherapy/bracing feel free to ask me! :)

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laurabaker1 said on 29 April 2010

I was diagnosed with ideopathic scoliosis in thoracic and lumbar regions at 14. I had two curves that were at 53 and 45 degrees, and as I live in Germany, their first step was for me to commit to physiotherapy weekly, which I did for 2 years (and went to a rehabiliation facility for a month for intensive physiotherapy) which didn't help at all as I had pretty much stopped growing and this makes it much harder to reduce the extent of the curvatures. I was then referred to the Werner-Wicker-Klinik, a hospital that specialises in spinal fusion surgery, and they told me that my curvatures were too far progressed and that I needed the surgery soon to prevent it getting much worse. I had the surgery the following August and I was in hospital for around 3-4 weeks. It was very painful afterwards. I also had to wear a back brace for 6 months afterwards & go for regular check ups.
Although I am now pretty much fine and only have small curvatures, I still believe that if I had been more aware of the condition I could have hit it earlier on and improved it through physiotherapy rather than having the surgery as it does create some restrictions; 8 months on now and I still experience frequent pain, I can't bend my torso at all which limits activities sometimes, I have a significant scar on my back and one on my hip and I am still not comfortable in sporting activities that I did before the surgery.
Anyone considering having the surgery, I would urge you to seriously consider it and try the other options such as bracing & physiotherapy first. I had tried a plastic brace before my operation though, and it was extremely uncomfortable and attracted attention as it involved metal bars lying across my chest. Still, the surgery was a lot worse than I had expected! It is beneficial though and I am glad to have had it.
I don't know if you can do this on here but if anyone has any questions about the surgery/physiotherapy/bracing feel free to ask me! :)

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lauren rennie said on 20 March 2010

Scoliosis has effected my daughter from the age of 1 years old. She was put in to a plaster cast for 3 months at a time giving her only one day to have a bath, she went through this process for 3 years and every time they renewed it they put her to sleep. Im thankfull that it has improved it slightly and my daughter is in a plastic back brace which allows it to be removed. The scoliosis is still there and she needs an operation but at 4 years old is still young, she will have to put up with a few operations before we reach adulthood. The freemen hospital has been fantastic and the staff are brilliant. But the treatment for this condition at a young age is a long and painfull process. The condition does effect the family routine and puts alot of pain on watching your child suffer not even being able to have a bath and not being comfortable and to even bend over.My daughter has been fantastic and brave and is turning in to a bright and beautiful little girl, were all so proud of how she copes with everything. I thinf the service has been excellent and the doctors are great with my daughter.

Joanne Rennie Durham

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pinkfloss said on 14 February 2010

I am 50 and for as long as I can remember I have suffered from chronic lower back pain. I went to my GP about 10 years ago and was told by him that the pain in my back was due to me being (His words) FAT!
I was so upset by this that I never went back again and tryed to get on with life as best as I could.
After moving from london to Cumbria 5 years ago I decided to go and see my new GP as the pain was getting unbearable. She sent me for a X-Ray and was diagnosed with Scoliosis. I was giiving accupuntre, physiotherapy and sent to a pain managment clinic.
None of which helped
. I am now on mophine to help with the pain as I can no longer stand or walk very far without a walking stick.
I also feel very depressed and lonely and feel very isolated as no doubt many other sufferes do.
I have a very loving and supportive family but I know it's hard for them to understand the day to day struggle
I go through.
I often wonder if my GP had been more helpful all those years ago would I be as bad as I am now.
It would be so nice just to have a few hours a day pain free.
Best wishes to all you other sufferes out there.

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audyd said on 01 February 2010

I am 44 years old and have suffered from lower back ache for 20 years. It has got so bad over the past 7 years. I was referred to a specialist in 2003 who did an x-ray only showing wear and tear they did nothing else and discharged me saying nothing they could do. I live on painkillers every day but they were doing nothing. After 6 years I fought for a MRI scan to be done which resulted in a spinal surgeon saying I had worn discs and referred me to the pain clinic. I decided to go France for a second opinion as I was getting nowhere in this Country will lots of tests I was diagnosed with Lower Lumber Scoliosis with very badly degenerated discs the only solution is for surgery which I am going to France to have as they will not perform this type of surgery in this Country to the extent I need. Trying to get the funding to have the operation in France it has been such a battle but I do intend to have a better quality of life there is not enough people who care in our NHS system down to funding etc. Don't give up if you need help keep looking and pushing as it is your right and this is a serious condition as one person said unless you have it people do not understand the pain we are in.
Good luck to you all.
Audrey

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Griffy said on 09 December 2009

I was diagnosed with a scoliosis when I was in my late twenties, only after seeing a chiropractor privately. I had been told for years by many gp's to go home and rest as my back was in spasm. The great news for me is that with the help of a fantastic Chiropractor my condition is managed well enough to only require the odd paracetamol or ibuprofen to manage. It seems costly to pay for this every 6-8 weekis but for me it's worth it to keep mobile and pain free.

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ApGcLaRkE said on 26 November 2009

im 14 and have just been diagnosed with a scoliosis in the upper part of my back. i didnt know i had it until i went in to see my doctor about something completely different. I agree that it took a very long time and alot of waiting to get an appointment with a specialist. My parents decided that we would go private so that i could get someone elses opinion and that it would be quicker.My scoliosis is only 31 degrees but they offerrd me lots of differnet treatments including surgery. Im not surre that i want a big rod in back or a massive brace on for ages becaus ethat would be awcward and anoying. i dont really know what to do. and have any of you tried going private?

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ApGcLaRkE said on 26 November 2009

im 14 and have just been diagnosed with a scoliosis in the upper part of my back. i didnt know i had it until i went in to see my doctor about something completely different. I agree that it took a very long time and alot of waiting to get an appointment with a specialist. My parents decided that we would go private so that i could get someone elses opinion and that it would be quicker.My scoliosis is only 31 degrees but they offerrd me lots of differnet treatments including surgery. Im not surre that i want a big rod in back or a massive brace on for ages becaus ethat would be awcward and anoying. i dont really know what to do. and have any of you tried going private?

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lou_dodd said on 03 November 2009

i started with back problems when i was 10 years old i am now 25 years old and i have been through accupunture, physiotherapy, epidurals and different painkillers several times and whenever i do any of these activites i am often crippled the day after sometimes not even able to get out of a chair!!! so after 15 years and seeing different doctors and consultants i finally got diagnosed with scoliolis 2mths ago and practically got told that theres nothing that can be done til it gets worse and that abit of physio will make it all better and thye decide just to give you more painkillers i dont want painkillers i would just want this to stop all together...i feel so depressed and lonely and let down by the nhs how can when we pay so much nhs insurance whenwe cant get no help for people with this horrible thing, you have people turning round and saying that we've only got a bad back but they have no idea how much pain were in....im so angry with the nhs but i know that if i ask for another opinion im gonna be waiting for mths just to here the same thing over and over again i mean how much pain do they want us to go through til they actually decide to do something....i would pay anything just to have no pain and to be able to stop taking strong painkillers and my back to be right so i cant work normally instead of having to have time off.

this may seem like some kind of rant to people that dont have scoliosis but for people that do i hope you can understand

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User360077 said on 28 October 2009

I am 22 and have lumbar scoliosis which was diagnosed by a chiropractor i visited at age 16 after suffering chronic back pain. After visiting my GP for more info i was refered to a specialist outside cardiff to deal with my case. 6 years on, 4 xrays and 2 MRI scans later, and not mention the hundreds of visits to different health care centres, i am left in the lurch. I too waited almost a year to finally get an appointment with my specialist.
I am told my scoliosis is 36 degrees, yet i have been offered no treatment apart from physiotherapy to help straighten my rotated pelvis ( a side effect from my scoliosis ). My rotated rib cage however has been left unmentioned.....Not once have i been offered a back brace, or any such support and i feel really let down by the NHS. I am currently studying Medical Science in University, where i hope to go on to specialise in Orthapedic trauma so i hopefully can make a difference and stop others from feeling sidelined as i do. Now the specialist has told me they have no further need to monitor how my spine progresses, and i am left totally alone to deal with this horrific condition at what i consider to still be a young and delicate age. It affects not only my self confidence but my quality of life as i cannot fully make automous descisions about what i want to do as my condition holds me back. I would urge people to keep questioning all the health care staff they come into contact with, and dont let them sideline your case as they have sidelined mine.

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holly_star said on 11 October 2009

I have been off work for 3 months. I hurt my back on duty (i am a care assistant) in a nursing home. I went to my g.p who sent me for an xray at the local hospital. It turns out I have thoracic scoliosis and due to the kind of lifting work I do, put too much pressure on my spine and has made it worse. I am in agonising pain and the pain killers I have been given make me feel very ill.
I have now been waiting 12 weeks to get an appiontment to see a specialist. I think the service is disgusting and I am none the wiser about how my back will be dealt with. Scoliosis is a serious condition but I think only someome that is/has suffered from it would understand that.

Holly shropshire.

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beepaul said on 06 October 2009

I agree my daughter has scoliosis and the waiting times to see a consultant is 7 week's!! which i feel is to long.

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paolab said on 21 September 2009

I was operated because of scoliosis in Italy more than 20 years ago and have a Harrington rod attached to my spine.
I disagree with your statement that scoliosis is not a serious condition as I believe it must be considered as a priority condition. Many types of scoliosis can cause permanent damage to blood vessels and nerve endings because of the shrinking and degeneration of intervertebral discs.

More work is needed to increase awareness of scoliosis at school so that it can be treated early on.

Paola Bassanese, London.

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