Living with neurofibromatosis can be challenging enough in itself, but unfortunately, this is one of the many conditions that can lead to the onset of scoliosis.
In this post, we’ll take a look at neurofibromatosis, how it is linked to scoliosis, and what can be done to treat a spinal curvature when it develops.

What is neurofibromatosis?

N.B. Strictly speaking, there are two different forms of neurofibromatosis: type 1 (NF1) and type 2 (NF2). NF1 is by far the more common of the two, and from here on out, we will be using the word ‘neurofibromatosis’ to refer specifically to NF1.
Neurofibromatosis (sometimes known as Von Recklinghausen’s disease) is a genetic condition that causes tumours to grow on the coverings of the body’s nervous system. The tumours are almost always benign, but as the patient reaches adolescence and approaches adulthood, they tend to manifest themselves in the form of visible lumps and bumps on the skin.
Neurofibromatosis
These bumps – which vary greatly in size and visibility from one patient to the next – are the most characteristic and recognisable symptom of neurofibromatosis, but the condition is also associated with a range of other problems as well, including:
  • Learning disabilities
  • ADHD and other behavioural conditions
  • High blood pressure
  • Impaired vision
  • Scoliosis (curvature of the spine)

What causes neurofibromatosis?

Neurofibromatosis is caused by the mutation of a specific gene that is responsible for controlling cell division in the human body. This can happen spontaneously, although the mutated gene can also be passed from parent to child (meaning that some – but not all – cases of neurofibromatosis are hereditary).
Neurofibromatosis affects roughly 1 out of every 3,000 babies born each year. The condition can be found in people of all races and sexes; interestingly, the condition can be detected in the womb via genetic screening tests, although the majority of NF1 sufferers aren’t diagnosed until the classic symptoms (bumps and coffee-coloured patches on the skin) begin to develop further down the line.

Scoliosis in NF1 patients

Whereas a person with idiopathic scoliosis (that is, scoliosis with no apparent underlying cause) usually won’t develop a spinal curve until they reach adolescence, a neurofibromatosis sufferer may well develop scoliosis during their childhood. In fact, roughly 10% of children with NF1 are also affected by scoliosis.
When neurofibromatosis does result the onset of scoliosis, it seems to happen because of benign tumours growing on the spinal cord. This leads to an overall weakening of the spine, which in turn can lead to the growth of a scoliotic curve.

Treating scoliosis in neurofibromatosis sufferers

Scoliosis that arises as a result of NF1 can generally be treated using the same methods as idiopathic scoliosis. Surgery may be recommended, as may the use of a back brace to halt the progress of the spinal curve. Since the spine tends to start curving at an early age when neurofibromatosis is the underlying cause, medical practitioners may even recommend simply waiting and monitoring the condition to see if it improves or deteriorates with growth.
The ScolioGold treatment courses that we deliver here at the Scoliosis SOS Clinic represent another effective treatment option and a far more appealing alternative to surgery in many cases. We have treated numerous patients with NF1 (including several children), and the results have been consistently impressive.
ScolioGold therapy uses a combination of proven techniques to combat the symptoms of scoliosis without the need for surgery or bracing. This exercise-based treatment programme can relieve pain, improve mobility, and reduce the angle of the patient’s spinal curve – click here to view upcoming course dates, or contact us now to arrange an initial consultation.
 
It has often recommended that, if an individual with scoliosis displays a Cobb angle of 50 degrees or more, they should seek surgical treatment in order to correct their curve. However, we at Scoliosis SOS have demonstrated on multiple occasions that patients with a 55 degree curve or more can be successfully treated using non-surgical methods. 
We have treated a large number of patients whose spinal curves exceed the oft-quoted threshold for surgery, with consistently impressive results. While the majority of our patients have Cobb angles that fall within the range of 20-65 degrees, we have successfully treated patients with spinal curves as severe as 120 degrees.
Many of our patients find the prospect of having to undergo surgery quite daunting and seek other ways to correct their spinal curves. Here at the Scoliosis SOS Clinic, we treat all types of scoliosis – from the mildest to the most severe and debilitating – with an approach that we call the ScolioGold method.
Eileen Morgan came to our clinic in her fifties after years of pain and disability. She was diagnosed with scoliosis at a young age, and at one point the angle of her curve was recorded as measuring 100 degrees. Watch the video below to find out how our ScolioGold therapy helped her.
The ScolioGold method combines a range of non-surgical techniques that help to relieve the pain, reduce the visibility of the curve, and prevent the condition from progressing further. These techniques have all been thoroughly researched and are proven to help with correcting scoliotic spinal curves. We’re always monitoring and developing this method to ensure that we continue to deliver gold-standard results and helo our patients to enjoy a better quality of life. If you wish to learn more about our ScolioGold treatment, please click here.
 
If you wish to book an initial consultation, or if you have any questions regarding our treatment programmes, don’t hesitate to get in touch with the Scoliosis SOS Clinic today.
Muscular Atrophy
Spinal muscular atrophy, often abbreviated to SMA, is a genetic disease which impacts the nerve cells connecting the brain and spinal cord to the body’s muscles. Due to deterioration of the link between these nerves and muscles, physical activity becomes progressively difficult, as the muscles begin to weaken and shrink.
While the cause remains the same in each type of SMA, different classifications of the disease exist, according to age, symptoms and mobility of the sufferer, which are classified as follows:
  • Type I SMA – This is the most common and severe form of the disease, which manifests itself during the first six months of an infant’s life. In these cases, complications include severe muscle weakness, breathing problems and trouble swallowing. Due to the severity of type I SMA, also know as Werding-Hoffmann disease, sufferers rarely live past 2 years old.
  • Type II SMA – This form of SMA is usually detected at a later stage than type I, usually between the ages of 7-18 months, and is often identified by failings to meet expected motor milestones. While type II does cause serious mobility issues, which will require the affected individuals to use a wheelchair, the majority of sufferers will enjoy long lives, without any additional impairments.
  • Type III SMA – While this type is often diagnosed between the ages of 18 months and 3 years, it is possible that the condition will not be identified until the individual’s teenage years, depending on the extent of their ability to walk independently. As they grow, individuals with type III SMA, otherwise known as Kugelberg-Welander disease, may find that their mobility becomes increasingly limited as they age.
  • Type IV SMA – This is the most rare form of SMA, which manifests itself during adulthood, usually in individuals aged 35 or more. In these cases, the disease progresses very gradually, leading to mild motor impairment.

How is This Connected to Scoliosis?

Due to the impact of the condition on the muscles supporting the spine, almost all children with SMA will develop scoliosis. The progression of the spinal curvature depends on the severity of the SMA, and is decreased in cases where the patient is able to walk. For the most active individuals, with only a mild form of SMA , scoliosis does not have a huge impact on their mobility levels, nor does it deteriorate substantially over time.
As well as scoliosis, which refers to the sideways curvature of the spine, patients with SMA may also experience other forms of spinal curvature, such as hyperkyphosis and hyperlordosis. These refer to the forward curvature of the spine, which affects the upper area in cases of hyperkyphosis, and the lower in cases of hyperlordosis. 

Can Scoliosis SOS Help Patients With SMA?

Here at the Scoliosis SOS clinic, we have been treating scoliosis and related spinal conditions for over a decade, using a combination of proven, non-surgical methods to construct highly-specific treatment programmes for our patients. Thanks to our thorough consultation and evaluation process, we are able to provide carefully tailored advice and treatment, which is personally customised to fit the needs of each patient’s curvature and condition.
If you would like more information regarding treatment with Scoliosis SOS, and how this could help you manage the symptoms of your spinal condition, please get in touch with us today!
Scoliosis refers to a sideways (lateral) curvature of the spine, but when your spine curves forward, this is often referred to as a Dowager’s Hump. If you have Osteoporosis of the spine (a medical condition in which the bones become brittle and fragile from loss of tissue), your vertebrate can fracture, causing Kyphosis (an excessive outward curvature of the spine, causing hunching of the back) or a spinal back hump.

Where did the term originate from?

Because so many women suffered from untreated bone loss, Kyphosis was mainly associated with older women. Since the definition of dowager is “dignified elderly women”, and due to the fact that many older women developed this particular condition, people began to refer to the curvature as a ‘dowager’s hump’ – regardless of the sufferer’s age or gender.

What Causes Dowager’s Hump?

When your spinal vertebrae are impacted by osteoporosis, they can become brittle, and fracture as a result. This is more common with patients who bend forward at the waist, putting pressure on the spine. There are 3 types of spinal fractures: Wedge Fractures, Biconcave Fractures and Crush Fractures. The primary cause for developing Dowager’s hump, is a wedge fracture, which refers to the collapsing of the front vertebrae. This causes the vertebrae to tip forward, which results in the spine to becoming misaligned. As more and more vertebrae collapse, the sufferer’s back will become increasingly bowed. Quite often, you won’t realise that you have a wedge fracture, as they are a silent abnormality which rarely cause pain. If you notice slight rounding of your back, however, it’s important that you seek medical help before it increases in severity. 

Can Dowager’s Hump be Treated?

If you suffer from Dowager’s Hump, you’ll be happy to know it can be treated without the need for surgery. Here at Scoliosis SOS, we treat a variety of spinal conditions using our carefully developed ScolioGold method, including those suffering from kyphosis. This treatment programme is our own, unique approach to spinal therapy, which combines a wide range of proven, non-surgical techniques, to provide the best possible results for our patients.
If you wish to learn more about the methods included in our ScolioGold treatment programme, click here. To book an initial consultation, or to approach us with any additional questions, simply click here to get in touch.
How we helped a woman with tricuspid atresia to manage her spinal curve
Katrina
Congenital heart disease (CHD) can manifest itself in a number of different ways. For example, people born with tricuspid atresia – an absence of the heart’s tricuspid valve – frequently experience fatigue, shortness of breath, and cyanosis (where the skin assumes a bluish tinge due to poor circulation).
Pertinently for us here at the Scoliosis SOS Clinic, tricuspid atresia can also be accompanied by curvature of the spine. Some years ago (when our clinic was still located in Suffolk), we treated a woman named Katrina – pictured above – who suffered from both tricuspid atresia and scoliosis. Katrina, who was in her twenties at the time, had undergone spinal fusion surgery as a teenager in the hope that this would correct her spinal curve; however, she received no further treatment or physiotherapy after the operation, and her curve subsequently began to progress once again. By 2007, she was experiencing constant pain and difficulty walking. Her scoliosis was even affecting her lung capacity – particularly problematic when you’ve already got a heart condition.
Katrina had all but abandoned hope of overcoming her scoliosis, but our ScolioGold treatment programme proved to be an effective solution, succeeding where spinal fusion surgery had failed her. Our exercise-based course helped Katrina to manage her spinal condition and dramatically improve her quality of life – here’s what she herself said in an article for GUCH News (issue 58, published spring 2009):
“The course taught me how to manage my condition and to maintain my corrected posture without the help of a therapist…I now visit the clinic every 12 weeks for a refresher and to learn new exercises. I am able to speak to the therapists at any time if I need advice or have any problems.
“I am very lucky to have the clinic so close to me, however I advise anyone who has scoliosis and may be looking for further advice to ring the clinic and see what they can offer you…if you live far enough away they can provide self-catering accommodation nearby.”
– Katrina Clarke, ‘My Experience at the Scoliosis SOS Clinic’
Scoliosis can be caused by any number of different factors; in fact, very often, the cause is not even clear (this is known as idiopathic scoliosis). Scoliosis sufferers with congenital heart defects are just one subset of our diverse patient base, and we are capable of providing effective non-surgical treatment for a wide variety of different spinal conditions at any time of life.
To learn more about our ScolioGold treatment courses and book an initial consultation with Scoliosis SOS, please contact us today.