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About Scoliosis

Around 1 in 35 people suffer from scoliosis. You are likely to know someone who has it. It’s a remarkably common but little talked about disease. Although it can occur at any age it is most prevalent between the ages of 10 and 15 when a growth spurt occurs. The majority of sufferers being teenage (probably body conscious) girls who are not likely to want to expose their condition.

Scoliosis is a cruel, progressive disease with no cure. Considering it’s reach and impact on society there is very little awareness with research disturbingly underfunded. There are currently no registered clinical trails. That means there is no route to improve the outcome for huge numbers of sufferers. In my experience it is dismissed as an insurmountable problem with all routes leading to an horrendous surgery. Few are interested in the challenge of taking it on.

Scoliosis presents as a 3 dimensional curve of the spine. Around 8 in 10 cases are diagnosed as idiopathic which simply means the cause is unknown – a situation I find shocking. It’s progression cannot usually be prevented (by standard treatments available in the UK). It’s not a condition that occurs through carrying a heavy bag or excessive exercise. It is a condition with route cause – in most cases unidentified.

Known influencing factors include neuromuscular (nerves and muscles), genetics (hereditary – presenting or not in the parent), syndromic – (known conditions that present it), congenital (developing abnormality in the womb) long term damage (degeneration).

Diagnosis:

Here in the UK we used have screening in schools for early intervention. The condition hasn’t gone away but the screening has! I want it re-instated.

Today it is largely up to parents to recognise the symptoms in their child and take them to a GP for assessment. This involves a simple observation which may result in a referral for x-ray and/or scans. The fact that their is so little awareness of the condition often results in parents distress over not recognising the condition earlier and GP’s not addressing it swiftly. This can result in delayed treatment and impact on management of the condition.

Treatment:

Observation: monitoring the impact on internal organs until the curve reaches around 50% cob

Casting: a permanent external brace used to guide the growth of the spine. This is only removed for remodelling.

Bracing: an external brace like a plastic corset worn 23 hours a day. Cannot correct a curve but may possibly prevent it worsening.

Surgery: Metal rods fused to the spine. Younger children, yet to finish growing have growing rods with repeated surgeries to lengthen the rods as they grow.

People seem to accept surgery as the norm but every single back surgery risks: reaction to anaesthesia or other drugs, bleeding, infection blood clots, and nerve damage that can resulting weakness, paralysis, pain, implants moving or detaching, grafts failing, dysfunction, and loss of bowl or bladder control.

Cause:

Around 8 in 10 cases are diagnosed as idiopathic which simply means the cause is unknown. Suffers are left with no support in finding a route cause to have any hope of addressing or gaining closure on if it cannot be addressed – a situation I find shocking.

It’s progression cannot usually be prevented (by standard treatments available in the UK). 

It’s not a condition that occurs through carrying a heavy bag or excessive exercise. It is a condition with route cause – in most cases unidentified.

  • Known influencing factors include: 
  • Neuromuscular; nerves and muscles.
  • Genetics; hereditary – presenting or not in the parent.
  • Syndromic; known conditions that present it.
  • Congenital; developing abnormality in the womb. Long term damage; degeneration. 





Diagnosis:

Here in the UK we used have screening in schools for early intervention. The condition hasn’t gone away but the screening has! I want it re-instated. 

The current situation is that it is largely down to parents to notice and recognise the symptoms in their child, and then take them to a GP for assessment. This involves a simple observation which may result in a referral for x-ray and/or scans. As scoliosis is a persistent condition this means regularly subjecting the body to radiation over a life time. There are other options available, but sadly not on the NHS. 

Due to the broad lack of awareness of the condition, parents often distress over not recognising the condition in their child earlier and GP’s frequently do not address it swiftly. This can result in delayed treatment and impact on management of the condition. Raising awareness and re-introducing compulsory screening in schools would increase early intervention for better outcomes. 

  • Recognising the symptoms 
  • GP assessment 
  • X-rays 
  • MRI scan (magnetic resonance imaging) CT scan (computerised tomography)

Treatment:

The UK has four methods of treating scoliosis. The experience of many sufferers however, is that surgery is seen as inevitable. There is little evidence that bracing works, so they are merely observed until their curve impacts their health and mobility before being given the option of surgery. If your set against surgery this is a one track road with very little hope.

Observation: Monitoring the impact on internal organs until the curve reaches around 50% cob

  • Casting: A permanent external brace used to guide the growth of the spine. This is only removed for remodelling. 
  • Bracing: An external brace like a plastic corset worn 23 hours a day. Cannot correct a curve but may possibly prevent it worsening. 
  • Surgery: Metal rods fused to the length of the spine. Younger children, yet to finish growing have growing rods with repeated surgeries to lengthen the rods as they grow. Once they have finished growing they graduate to spinal fusion where a bone graft is used to fuse the spine solid.  


Complications:

It astounds me that surgery is seen as the accepted and normal solution for scoliosis. There is so much risk of complication or error. Some people do not know any different. Others desperately want the quick fix to receive their pain and other complications. Surgery should not be considered lightly. Comprehensive, conservative and holistic treatments should be made available and exhausted by scoliosis sufferers.  

Complications of the condition: 

  • Self esteem; sufferers frequently experience emotional challenges resulting from the physical deformity endured. 
  • Lung and heart problems; the ribcage can impact on internal organs Compressed nerves; bones can sometimes compress nerves resulting in numbness, pain or control of some bodily function. 

Complications of surgery: 

  • Reaction to anaesthesia and other drugs 
  • Bleeding, infection, clots 
  • Nerve damage 
  • Scar tissue build up 
  • Movement or detachment of implant 
  • Degeneration