Noonan syndrome and scoliosis

Noonan syndrome is a congenital disorder that can impact the formation and development of several areas of the body.

Characterised by a variety of distinctive features – including facial abnormalities, stunted height and heart defects – Noonan syndrome is caused by a mutation of one or more genes.

According to the NHS, it's estimated that the number of children born with Noonan syndrome is somewhere between 1 in 1000 and 1 in 2500. The condition affects all ethnicities and sexes equally.

Notably, children with Noonan syndrome are also more susceptible to spinal conditions such as scoliosis.

 

Scoliosis as a result of Noonan syndrome

In 2001, a Korean study carried out by the Department of Orthopaedic Surgery in Seoul National University Hospital scientifically proved the correlation between scoliosis and Noonan syndrome.

Of the 60 patients with Noonan syndrome included in this study, 30% were found to have spinal deformities. Of those patients, two patients had congenital deformities, while the remaining 16 were diagnosed with scoliosis.

Based on the evidence provided, the study concluded that scoliosis with an associated thoracic lordosis occurs more frequently in Noonan syndrome than had been previously reported.

Today the relationship is well-documented, and early assessment of children with Noonan syndrome is recommended to ensure prompt detection and advanced treatment of scoliosis symptoms.

 

Treating scoliosis in Noonan syndrome patients

We at the Scoliosis SOS Clinic treat scoliosis in people of all ages and backgrounds. Our non-surgical treatment courses are ideal for all manner of individuals, including those with Noonan syndrome.

Combining the tried and tested Schroth method with an assortment of additional complementary techniques, our ScolioGold programme is designed to promote natural correction of asymmetric posture without invasive surgery. Our treatment method has an unrivalled level of success, providing significant relief to most patients within just a few weeks.

Better still, our methods are continuously evolving in line with medical breakthroughs and non-surgical development, allowing us to modify and improve our programme as the scientific study of scoliosis advances.

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Lots of Scoliosis SOS patients ask us the same question:

What will I need to do after my treatment to continue seeing results?

The typical length of a ScolioGold treatment course is 4 weeks, and while our patients routinely see significant improvements within this short time, it is the long-term results that they (and we) are most concerned with!

During those 4 weeks of treatment, we teach every patient a set of exercises and stretches that will help them to continue their treatment independently when they get home. Each patient leaves our clinic with a daily exercise plan that's tailored to their condition and long-term goals.

To give you a better idea of what those daily exercise routines contain, we spoke to Eleanor - who started ScolioGold treatment back in 2016 - and asked her a few questions about her daily exercise routine and how her scoliosis has been since she left the clinic.

Scoliosis SOS patient Eleanor

Hi Eleanor! How did your initial ScolioGold treatment course help you?

I started treatment 3 years ago, when I was 12 years old. My consultant had told me that I needed to have surgery on my back because my curve was progressing, but my mum researched other options on the Internet and found the Scoliosis SOS Clinic. I did a 4-week course during my summer school holidays, and within a couple of days of starting treatment, my parents noticed that I was standing taller and straighter. By the time I finished treatment a month later, I had grown 3cm!

The main thing it has helped with is my self-confidence; I no longer feel ashamed of my back or have to hide under baggy jumpers. The best part was when we saw the consultant for a check-up appointment he said that I was no longer a candidate for surgery.

 

How often have you come back to the clinic since then?

I usually come back to see my therapist Charlie every 3 months, but once I have finished growing this will change to every 6 months. I grew a lot last year, so at Christmas, I did a refresher week where I learnt a few more advanced exercises and joined a couple of the group therapy sessions too.

 

What exercises do you do at home?

At my appointments, Charlie gives me a new exercise schedule that tells me what I have to do on each day. It's nice to have a change, and it keeps me motivated when I go back home. Each day includes 3 specific exercises and a couple of stretches. My favourite is side-lying with a pole as I can really feel my muscles working when I do it and it always makes me feel straighter afterwards.

Some of the other things I do are: muscular cylinder, prone on stool, semi-hanging, PNF Pacquet and ASC.

 

How often do you do scoliosis exercises at home?

As I am still growing, I have to do 45 minutes of exercise each day.

 

Are the continued exercises helping you to manage your condition?

I have been discharged from the hospital, but the measurements and scans Charlie does at my check-ups show that my condition is stable and it improved a bit more after I did the refresher week.

 

If you're suffering from scoliosis, we can provide an entirely exercise-based treatment course that will help you to manage your condition independently. To enquire about our treatment courses, give us a call on 0207 488 4428 or use the links below.

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Sad dog waiting

The people of the UK are very lucky to have the National Health Service, but it's fair to say that the NHS is far from perfect.

Issues like crowded waiting rooms, bed shortages and understaffing have plagued hospitals across the nation for decades. These problems are largely caused by insufficient NHS funding.

However, for scoliosis sufferers seeking spinal treatment on the NHS, one negative outweighs all others: the notorious length of NHS waiting lists.

 

NHS Waiting Times

Unfortunately, a lot of NHS services come with interminable waiting times. Even a simple X-ray can take weeks to arrange, while surgical operations and other treatments can roll into the months, depending on the perceived urgency.

According to www.nhs.uk, the maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service or the hospital receives your referral letter.

If the hospital cancels your operation at the last minute for non-clinical reasons, they should offer another binding date within 28 days; however, if your operation is cancelled before the day of admission, the hospital is not obliged to provide an alternative option within 28 days.

 

Luck of the Draw?

This NHS patient information pamphlet on scoliosis surgery simply states that "there is usually a wait before your operation, and the amount of time can vary".

You may be seen sooner if your case is especially urgent, but in most cases, the length of your wait will come down to luck.

 

Hospital waiting room

The Effects of Waiting Times on Scoliosis

A study published in Orthopaedic Proceedings reported that, according to an independent investigation of 61 scoliosis patients, the average waiting time for scoliosis surgery was actually ten months.

Worse still, the extended waiting time resulted in 20% of those patients suffering "significant curve progression" as a result, and 10 of the 61 patients (approximately 16%) required more extensive surgery than originally planned.

The report concluded that long waiting times can have a detrimental effect on the surgical management of scoliosis patients.

 

ScolioGold: An Alternative to Waiting

The stats and figures surrounding NHS waiting times can be rather alarming for people with scoliosis, especially for those awaiting surgical treatment.

But there may be another way. The Scoliosis SOS Clinic run regular scoliosis treatment courses, allowing you to choose your preferred treatment dates instead of spending months on a waiting list.

After your initial consultation, you will be given a summary of the clinical diagnosis, informed of the proposed treatment (including expected outcomes) and given an overview of our estimated timescales.

Our therapists treat scoliosis patients using the ScolioGold method, which encompasses a variety of proven non-surgical techniques such as the Schroth method and FITS.

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International Federation for Spina Bifida

Friday 25 October 2019 is World Spina Bifida and Hydrocephalus Day. This year also marks the milestone 40th anniversary of the International Federation for Spina Bifida and Hydrocephalus.

What is Spina Bifida?

To mark this occasion, we'd like to share the story of Samantha Joyce, a Scoliosis SOS patient who has spina bifida as well as scoliosis.

 

Patient Story: Samantha from Sidcup

Samantha is a woman from Sidcup, Greater London who got in touch with the Scoliosis SOS Clinic after our recent appearance on BBC One. She was diagnosed with scoliosis at 11 years old; she also has spina bifida and hydrocephalus.

Samantha was prescribed a scoliosis brace, and when she was 13, surgeons placed screws in her spine in order to correct her spinal curve. Unfortunately, this operation did not have the desired effect - after a long and arduous recovery process, Samantha had to have the screws removed at the age of 18 because they had caused an abscess and she had lost the use of her left leg!

Samantha is now in her 40s, and she was still experiencing back pain as a result of her scoliosis and her spina bifida. She came to the Scoliosis SOS Clinic in the hope that our therapists would be able to help her - watch the video below to find out how she got on.

Feedback from Samantha

"Thank you all so very much for all you have done. I'm so glad I found out about this clinic and had the opportunity to experience the wonderful work you do.

"It's amazing how I have changed since I started: pain-free, more definition in my legs, and my whole body feels freer. A friend said, without prompting, how much straighter I was sitting, and I'm able to sit and stand for longer without any pain.

"I have now been discharged from King's College Hospital after a year and a half. Thank you for being a valued part of my recovery, and keep up the fantastic work you do - it's invaluable!"

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Child sitting in W position

Anyone who has scoliosis will be well aware of the importance of posture and sitting correctly when it comes to spinal comfort.

However, did you know that there is one position in particular that can be particularly damaging when it comes to children's spinal health?

That position is the so-called 'W position'.

 

What is the W position?

First things first, you're probably wondering what the W position is. While the name may not be familiar, the pose most certainly will be.

A favoured position for many children and even some adults, the W position is where a person sits flat on their rear with their legs folded underneath, yet spread out to each side.

The result creates a 'W' shape from foot to foot - not too dissimilar to the Virasana ('Hero Pose') in yoga.

 

Why is the W position problematic?

While the effect of the W position on the body is a matter of some debate. It's becoming an increasingly hot topic among parents, particularly due to its perceived impact on children's development.

A number of osteopathic experts have reported that the W position can cause the lower back to arch. It's also been said that it can put pressure on lower body joints such as the hips and knees, weakening the core muscles as a result.

The widespread concern has seen the story picked up by numerous news outlets across the UK in recent years, including national publications like the Daily Mirror and the Daily Mail.

However, conflicting reports have been published that suggest it has no bearing at all on spinal development - for example, see this article from Today.com.

 

Is there cause for concern?

Despite the mixture of opinions on the matter, this is one of those scenarios where it's better to err on the side of caution.

If a simple adjustment in sitting positioning might improve your child's posture and spinal health, it's undoubtedly a precaution worth taking.

A weakened core can have a notable impact on agility, sporting performance (such as running and jumping) and general balance.

Meanwhile, evidence suggests that the W position can also increase the likelihood of hip dislocation and may even lead to a curvature of the spine.

 

Correcting the W position

If you notice that your child is routinely sitting in the W position, try to get them out of the habit.

Encourage them to sit with their backs against a solid surface for support, and instruct them to sit with their legs out in front of them.

Ideally this would be on a chair; however, if floor sitting is preferred, provide pillows for increased comfort.

SEE ALSO: How to Check Your Child for Scoliosis >>

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