BRAY PEOPLE                                                                             WEDNESDAY, SEPTEMBER 09, 2009

Non-surgical treatment joy for Jack

PARENTS LEARN OF SCOLIOSIS THERAPY IN UK VIA INTERNET

Deborah COLEMAN

A YOUNG Arklow resident who has suffered with scoliosis since early childhood has been enjoying a new lease of life following a month of radical non-surgical therapy at a UK clinic.

Jack Gaffney, (14), who lives with his parents Valerie and Frederico in Wyndermere Avenue, lived in constant fear of having to undergo serious surgery before his parents learned of a new treatment on the internet.

Jack, who is a student at Arklow CBS has curvature of the spine and also suffers from klippel-fiel, a congenital defect which means that three of his seven vertebrae are fused together causing him terrible pain. He was born in Argentina and moved to Ireland, the home of his paternal grandfather at the age of eight.

Jack’s condition had been monitored by an orthopaedist in Buenos Aires and his parents hoped it would improve but nothing non-surgical could help. When the Gaffney family moved to Ireland, Jack became an out-patient at Crumlin Children’s Hospital where the dangers of surgery were outlined to them.

In recent years, Jack’s condition had worsened and despite trying many therapies such as physio, swimming, massage and yoga, was still deteriorating.

‘We were always on the lookout for a new treatment as we did not want to take the option of surgery. The risks were outlined to us in Crumlin and Jack could have been left in more pain,’ explained Valerie.

‘The x-rays told us nothing and it was difficult for Jack as nothing was helping. Eventually we found a clinic in Suffolk which specialises in ScolioGold therapy,’ she added.

Here Jack spent four weeks learning a new specialised exercise regime with tools such as pilates balls, elastic bands and bars.

To date, his condition has dramatically improved and his family says they cannot believe the change.

‘It’s really amazing. We don’t know how but it really is working. Jack is so much happier and more confident. They also helped him emotionally and he got to meet other young people with the same condition and talk to them. We definitely recommend it,’ Valerie said.

Jack will re-attend the clinic in three months for a progress report.

www.cambridge-news.co.uk                   Saturday, January 23, 2010

BACK AT MY BEST!

Facing a life of pain or potentially dangerous surgery to correct a spinal condition, Cambridge medical student Jessica turned sleuth to research her own solution – with remarkable results

Real Life EXCLUSIVE

By Louise Martin – Feature writer

ENJOYING a summer holiday with her family, Jessica Wong didn’t have a care in the world. Having just completed her GCSEs, and looking forward to starting her A-levels that September, Jessica’s life changed suddenly when, during a day on the beach, her mum noticed something was wrong with her back.

“I was in my bikini, so it was probably quite visible then,” explains the 19-year-old Cambridge student. “Apparently, it’s quite a classic story about how scoliosis is noticed, because when people have their clothes on you don’t notice it too much.”

What her mum had noticed was that Jessica’s back wasn’t straight – in fact it was curving at an alarming angle.

Once back in the UK, and with her mum for support, Jessica went to her GP who diagnosed Scoliosis: a back condition that causes the spine to curve to the left or right. It affects more than four per cent of the population.

“Once I started looking I did notice the curve in my spine more and more, especially when I looked at photos and in the mirror,” remembers Jessica. “I avoided wearing certain types of clothes that showed it off.”

Referred to an orthopaedic surgeon to confirm the diagnosis, Jessica was dealt the devastating news that Scoliosis is incurable. The only treatment available to correct the spine is a major operation involving metal robs being permanently inserted under the skin either side of the spine, before the spine is fused solid – an operation which carries the risk of paralysis.

“I was told that because there is no cure I just had to observe my spine to see if it got any worse – generally, just live with it,” says Jessica. “The operation wasn’t offered to me, but it was never something we were considering or wanted.”

Disappointed with the consultation, Jessica threw herself into her studies in her home town of Chichester, with her increasingly curving spine and recurring back pain as constant reminders of her Scoliosis.

“I searched Scoliosis a lot on the internet, where there are lots of horror stories. It didn’t really help, it just panicked me,” explains Jessica.

“I was definitely unhappy living with Scoliosis then, generally because I felt I was quite young to be feeling like I did.

“I didn’t notice it every minute of every day but in my Saturday job, which was at a pharmacy, I would feel very achy at the end of my shift from standing up all day and just being generally uncomfortable with backache.

“I was always thinking about the Scoliosis and that I was going to live like this for the rest of my life, with aches and pains. I thought, if I’ve got backache now, what will it be like when I’m older?”

Managing to cope with the pain during her A-levels, Jessica didn’t let the condition affect her studies and, in 2008, was delighted to get the grades required to study medicine at Cambridge.

However, at the start of her first year in the city, Jessica began to experience excruciating back pain and returned to a website, Scoliosis SOS, for help.

“My back was getting worse and I wanted to do something about it,” remembers Jessica.

After discussing Scoliosis SOS with her parents, Jessica went to the Suffolk-based clinic for a consultation and to discuss attending a four-week treatment course.

Founded and run by Erika Maude, who has Scoliosis herself, the clinic opened three years ago and is the only one in the world to offer treatment following the non-invasive ScolioGold method, which uses a combination of non-surgical treatments.

Originally writing the treatment off when she was 16 due to its price (about £3,000 for the four-week course), and because it was not a guaranteed cure, Jessica and her parents now felt it was her only option.

Now living relatively pain free, Jessica’s back continues to improve following the course thanks to her daily exercise routine. “I get quite a nice feeling from the exercises, it’s like a big stretch in my back,” she smiles.

“I have to put the effort in to make sure I do them. There are some days when I actually can’t do them because I’m too busy, or I’ve gone away for the weekend, but generally I do it every day. Some days I’d rather not, but I make myself.”

Sitting with perfect posture, which Jessica tells me requires a lot of concentration, it is impossible to tell that Jessica suffers from Scoliosis.

“A lot of my friends don’t really believe that I have a spinal problem because you can’t see it, but they would know if I’m suffering a bit or if I’ve pushed myself too far as I’ll be a bit grumpy,” laughs Jessica.

Despite being able to manage her Scoliosis through exercise, Jessica admits that it’s frustrating not knowing what caused her spine to curve in the first place.

Jennie French                                            August 2010      iSKATE Magazine 

Hampshire teen defies scoliosis to keep skating

Energetic, enthusiastic and full of life, fourteen-year-old, Jennie French, from Fareham in Hampshire was an active, aspiring young sportswoman. Having taken up skating two years ago, Jennie could frequently be found on the local ice rink, working towards her NISA Gold Passport award.

Jennie was passionate about skating and loved the freedom being on the ice gave her.  “I love the feel of it,” she says. “It’s really elegant. I feel really good when I skate and I love gliding.”

However, shortly after taking up skating, Jennie was diagnosed with scoliosis, a severe spine condition that had started to twist and distort her spine sideways. The condition affects more than four percent of the population and, if left untreated, can lead to fatal heart and lung problems. According to NHS, the treatment options for scoliosis include observation, bracing, casting, and surgery. Jennie’s surgeon offered surgery or observation. Spinal fusion surgery, the technique unlisted to correct scoliosis is a complicated technique where the spine is straightened using metal hooks and rods, before being fused into place using bone grafts.

Jennie hopes to avoid the difficult surgery, as in addition to the risk of surgery itself, the metal rods inserted during the procedure would likely inhibit Jennie’s skating, as well as other physical activities during a lengthy recovery.

Jennie’s mum, Janet French, relates: “We were never offered bracing by the surgeon that we went to see and we wanted to avoid the operation if at all possible. That’s why we searched for more information.”

Their internet search brought them to Scoliosis SOS, a clinic specialising in non-invasive management of the condition. After a free initial consultation with one of the clinic’s Consultants, Jennie’s parents booked Jennie in for an intensive four week course of treatment at the Scoliosis SOS clinic in Suffolk. Once at the clinic, Jennie initially felt apprehensive as she had no idea of what to expect. However, by the end of the first week of the course, Jennie had fitted in well and felt extremely motivated by the enthusiastic team of specialist therapists. Jennie also felt at ease being surrounded by other people suffering from scoliosis.

Says Janet, “Jennie spent four weeks doing those exercises to help manage the pain and to retrain her muscles that support the spine. We have had another x-ray done since she was diagnosed (last November) and she is due to go back this November.”

With a little luck and Jennie’s diligent persistence, the French family are keeping their fingers crossed that they will again find no change when Jennie returns for her x-rays, meaning that the exercises are stemming the worsening of the curvature in Jennie’s spine. In fact, they hope that through the exercises alone, Jennie will be able to stave off the need for surgery indefinitely.

Following on from this treatment, Jennie has noticed a dramatic improvement in both her posture and physical appearance. Though Jennie says, “I didn’t really get a lot of pain” she did describe experiencing more of a constant “ache.” Regardless of how it is described, she credits her initial treatment course and her ongoing 30-45 minutes of home care with its banishment. Jennie will continue to do home-based exercises as long as she continues to grow, as she can continue to alter and influence its curve during that time; once she has stopped growing, then the ability to make a difference will diminish and her routine will as well.

As a bonus, though, Jennie notes, “I have improved my posture and I am really pleased I can now take back some control!”

Says Jennie, “Scoliosis hasn’t had any affect on my skating as such. I just felt I could keep going on and (the exercises to treat my scoliosis) really helped with posture. I’ve carried on with my life and I haven’t stopped doing what I like.”

Despite the aches and discomfort associated with scoliosis, Jennie did not have to take any time off skating on its account. She did (and continues to) skate once a week in a lesson, more during holidays when more time is available. Jennie skates at the Gosport ice rink and reports that she doesn’t believe she will be limited by the scoliosis, nor will her skating negatively affect her health.

In fact, the two have a bit of a symbiotic relationship, as the exercises have helped her stand up straight and maintain posture – two core abilities for skaters. “Posture helps a lot, and I’ve been taught that. In my spins and jumps, I’m still having to stand up straight – just like other people. It’s just a little more difficult,” says Jennie. “Sometimes, I feel like I’m leaning over to one side – which is the way my curve goes – when I do certain moves, but the clinic has helped me to stand up straighter and my moves have got better.”

So good, in fact, that Jennie recently auditioned and won a part in the Christmas gala at her local rink. Through rehearsals have yet to begin, Jennie is looking forward to performing to music from Riverdance for her next skating award – hopefully just in time to celebrate another set of x-rays demonstrating that sometimes, no news is unquestionably good news.

Hereford Times – Thursday, September 8, 2011  herefordtimes.com

By Lauren Rogers Lauren.rogers@herefordtimes.com

A WOMAN with a spinal condition that left her in crippling pain says a little- known treatment has saved her from a life of discomfort.

Margaret Simmonds, from Bishopstone, was 24 when she was diagnosed with scoliosis, a condition that causes the spine to excessively curve sideways.

Margaret Simmonds

Having previously led an active lifestyle, Margaret, now 33, was experiencing extreme pain and discomfort on a daily basis.

She was forced to give up volunteer work with Christian Aid, struggled to walk very far with-out having to sit down and began to hate her physical appearance.

She was told that if her condition continued to progress that she would need to undergo major surgery to have metal rods fitted down her back.

The nine-hour operation would have seen the rods being inserted either side of the spine, before the spine is fused solid.

After endless X-rays and appointments with specialists, Margaret was told that there was nothing anyone could do for her besides spinal fusion surgery.

But it was around that time that she first heard of the Scoliosis SOS clinic near Ipswich Suffolk.

The Clinic, which opened five years ago, specialises in non-surgical treatment involving physiotherapy and exercise.

Margaret signed up for a four-week intensive course and noticed improvements within days, from the pain subsiding and having a better understanding and emotional acceptance of her condition.

She said: “Without the clinic my life would be very different. I would probably have had the surgery as there is only a certain amount of time anyone can put up with the pain.

“The very sad thing is that if I had agreed to having my spine fused solid, I may still have had pain.

“The problem is that none of the orthopaedic surgeons tell their patients that the surgery just improves the cosmetic appearance of the spine. It does not help with the muscle imbalance which is the main cause of scoliosis pain.

“Being pain free has allowed me to get back to my charity work. This is something I am absolutely passionate about and I really do believe that if everyone gave a few hours of their time to local charities, the world really would be a better place.”

According to the Scoliosis Association (UK) charity, the condition affects three to four children in 1,000.

As far back as 500BC, ancient Greek physician Hippocrates was writing about the condition which takes its name from the Greek word for curvature.

Some severe cases of scoliosis can lead to diminishing lung capacity, putting pressure on the heart and restricting physical activities.

To contact the Scoliosis SOS centre call 01394 389 670 or visit scoliosisSOS.com