S is not only for sweet and sassy, but for scoliosis too

Scoliosis is a condition where the spinal cord is bent

– It causes other health related complications and sometimes leads to premature death

– Keziah Wanjau spoke to TUKO.co.ke about her experience of living with scoliosis as well as her surgery and awareness initiative

Out of every one thousand children, three to five of them over the age of ten years develop a spinal curve that is considered serious enough for treatment.

An image showing the difference between people who have and do not have scoliosis. Image: NHS UK

Despite having facilities for diagnosis and rehabilitation, the country is still grappling with issues of surgery.

“Scoliosis is a condition where the spine is not straight. It is bent. It means that part of the spinal cord is not balanced because once you stand up, it bends in one direction forming a letter’ s’ or c. It meand one of the bones is missing and so an operation would be needed to remove the bone on the opposite side of the missing one or add an additional piece- mainly metal- and fit it in the empty space to straighten the spine,” said Dr Vincent Mutiso, an orthopedic surgeon at the Nairobi Hospital.

On the maximum, it can take up to KSh 2 million to treat and rehabilitate one individual with scoliosis as the only facilities to treat this are found in Egypt and South Africa.

Keziah Wanjau at a wedding event.

One scoliosis survivor, Keziah Wanjau, sat down with TUKO.co.ke and told us her story as well as her awareness initiative regarding scoliosis.

“I was diagnosed with scoliosis in 2006 sometime in mid-June and I didn’t realize how serious it was until my curves started progressing. My family decided that we should go see a certain doctor and he recommended surgery. I was scheduled to undergo one in November the same year and it wasn’t easy,”said Keziah.

Her mother, Mary Wanjau, had met Dr Mutiso with whom she talked to about Keziah’s condition and it was through him that Keziah was able to get treatment. The surgery took over eight hours.

“He mentioned that there were some doctors who were coming to the country on a project with Kenyatta National Hospital to do knee and back surgeries. We weren’t sure they would have a spinal surgery doctor but luckily, there was one when they came in September and she had her surgery,” said Mary

She further added that her surgery was a difficult time for her entire family but it brought them together because they were always praying together as they all took turns to spend time with her at the hospital. She has two other children but they do not have scoliosis

“Equipment has been improving with time. Some of it is donated because we get visitors who come to assist us in this kind of endeavor and very often they leave their equipment behind. It is because of this that we have had a buildup of surgical equipment,” added Mutiso.

In making it her life achievement, Keziah set out on a mission to raise scoliosis awareness in Kenya.

“I have this Facebook page, S for Scoliosis Initiative, where I write my scoliosis story as well as encourage others. Apart from that, I got a tattoo on my arm. It’s a scoliosis ribbon with the word hope on it just to show that there is always hope for everything,” said Keziah.

Her mother told TUKO.co.ke that at first they had refused to allow her to have the tattoo done but when Keziah explained her idea, she came on board.

“She probably got the idea from her grandfather who came back with a tattoo after taking part in the war in Burma. She said that whenever someone would ask her what her tattoo meant, she would then talk about scoliosis and raise awareness,” added her mother.

The ‘Bring Zack Home’ campaign which aimed to raise funds to build a spinal rehabilitation center in Kenya was supposed to bring hope to patients suffering from spine related complications.

The initiative however flopped as no facility has been built to date after Kenyans raised millions of shillings.

Had she not gotten treatment, Keziah would have experienced heart and lung complications associated with scoliosis.

The condition is also known to cause premature death in patients.

“People should know there is treatment available. They should not lose hope because they would not have anything to look forward to,” concluded Keziah.

Source : TUKO , May 2016

 

Getting together to send little Charlie to US for life-changing treatment

Community groups in the Ballinderry area of Co Derry are getting behind a ten month-old baby living with a rare spinal condition to raise enough money so he can travel to America to avail of specialised medical treatment.

Little Charlie Ferris was diagnosed with infantile Scoliosis back in February.

If left untreated, the spinal deformity can lead to severe twisting of the spine, respiratory problems and even decreased life expectancy.

Charlie’s anxious parents, Jody and Donna, have vowed to do everything in their power to help their baby boy.

Following hours of research, his mum discovered specialised Scoliosis treatment offered at Shriner’s Hospital, Philadelphia which could potentially avoid invasive surgery.

Medical experts at Shiner’s Hospital believe that early diagnosis and treatment is key for a better outcome.

Following a lengthy application process, Charlie was accepted on to the treatment programme.

On April 3, Jody, Donna and their four children flew to Philadelphia.

Just a few days later, Charlie was fitted with a Mehta cast, which has been specially designed to correct the curve in his spine.

In the months and years ahead, little Charlie and his parents will make that same journey, to get the cast refitted.

His doctors don’t know who long Charlie will need treatment, or if it will rule out surgery in the future, but Jody and Donna are willing to do whatever it takes.

During the family’s time in America, local community groups in the Ballinderry area combined forces to launch a fundraising drive for Charlie’s treatment.

Brian Rocks, who is helping to lead the campaign, described it as ‘local people coming together to help a local family’.

He said: “The local community here in Ballinderry were aware that a local child was living with a rare spinal condition and had travelled to America for treatment.

“A number of local groups offered to do some fundraising to help out the family.

“However, it was suggested that all the groups come together rather that separate groups doing their own individual events.”

In the coming days, the groups will be delivering envelopes into the local community for anyone who would like to make a donation.

They are also planning a ‘Guess of score’ of the Derry v Tyrone game on Sunday, May 22.

Plans are also ongoing for a coffee morning to take place over the summer months.

“All this simply is local people coming together to help a local family,” said Mr Rocks.

Charlie’s parents said they were ‘overwhelmed’ by the group’s efforts.

“When we heard that local groups had come together to fundraise for Charlie’s treatment, we were totally so overwhelmed. Other than our family and friends, not many people knew of Charlie’s condition so to hear that local groups wanted to help, we just could not believe it.

“We cannot thank these groups enough for their kindness. It means so much to us,” said Donna.

Source : Derry Now , 11th May 2016 

Louis Vause's Daughter Melody Beats Back Pain with Scoliosis SOS

Melody receives treatment for her scoliosis

Louis Vause is a pianist known for his work with the likes of Madness and Blur guitarist Graham Coxon. Two years ago, Vause's daughter Melody was diagnosed with scoliosis, an excessive sideways curvature of the spine; once this diagnosis had been made, Louis and Melody were told that surgery was probably the only way for Melody to escape the pain that was quickly becoming a large part of her everyday life.

"It was quite upsetting to know that the only option was a huge operation," recalls Melody, now a 22-year-old interior design student. Father and daughter were initially resigned to the surgical solution, but after doing some research, they decided to look for an alternative: "It was only when Melody showed me the - frankly quite frightening - pictures of the operation that I though, 'Oh God, if it goes wrong it's paralysis or something like that'," says Vause.

After a series of online searches, it was decided that Melody would attend a treatment course at the Scoliosis SOS Clinic in London. These courses are designed to help scoliosis sufferers to overcome their symptoms without any surgical intervention; this is achieved through exercise-based techniques such as the Schroth method, which originated in Germany in the early 20th century.

The results were phenomenal. "From day two, I already felt a significant difference," says Melody, and her father agrees: "I couldn't believe it...I went, 'Already? Day two?!'"

Melody is just one of many scoliosis sufferers to have benefited from the Scoliosis SOS Clinic's non-surgical treatment courses. To find out more, please visit the following links:

SCOLIOSIS SOS WEBSITE

scoliosissos.com/

Source : OPen PR , 18th May 2016 

‘Life is on hold’ for scoliosis sufferer

                                                                     Aisling Corcoran

A scoliosis sufferer, who has been on the waiting list at University Hospital Galway (UHG) for almost two years, has said her “life is on hold” until she undergoes her surgery.

Aisling Corcoran has had to deal with her condition getting progressively worse while she waits to be called for surgery.

Ms Corcoran, who is originally from Castlebar, Co. Mayo, was first diagnosed with scoliosis, a painful curvature of the spine, when she was 13 and had her first operation carried out in Crumlin in 2000 where she had rods put in her back.

However the rods had to be removed in 2013 due to infection and the operation was carried out in UHG.

Since then the now 29-year-old has been waiting for another scoliosis surgery to change the position of her spine.

“My life is on hold. I can’t do anything career-wise or even go on holidays or anywhere because I’m thinking they might ring and give me a date,” she said.

The Galway Independent first spoke to Ms Corcoran in January of this year and she said she has “no update” more than three months later.

Ms Corcoran said she is in “severe pain” and still has no date for when she will get to have the operation.

“Mostly in the mornings I’d have a lot of pain and in the evenings then I get tired.

“It is severe and it’s affecting me with different things like chest pains and it makes me agitated more than anything, it’s hard to relax,” she added.

As well as weekly visits to her GP, Ms Corcoran has been attending physio twice a week in an attempt to gain some relief from the pain. However that relief is only temporary she says and long-term it has no real benefit.

Ms Corcoran said she has also contacted Fine Gael TD Michael Ring as well as Taoiseach Enda Kenny in a bid to hurry up her surgery but, as of yet, her attempts have been to no avail.

She said her and her family remain anxious until she gets a surgery date.

“My family are very worried as well. They’re stressed about it too.”

Gary Farrell, founder of support group Scoliosis Ireland, has also been pushing to get Aisling’s surgery underway.

He said the waiting times being endured by Aisling and other patients is “absolutely ridiculous”.

“For some reason Galway, because it has the lesser numbers, it does get pushed a bit and it’s ridiculous because it’s as important in one end of the country as it is in another,” he said.

According to Mr Farrell the long delays can cause increased deformity in the patient, leading to more complex surgeries and longer recovery times.

The group are currently petitioning to get school screenings made available as well as trying to bring down the waiting times for children.

He said early intervention is key and school screenings provide the chance to detect early curvatures.

“These are vital to try and get a curvature detected early. It doesn’t necessarily mean it’s going to lead to anything, the curvature might not progress, but at the end of the day at least it’d be on the system to be seen rather than a parent copping it or somebody in a school copping it,” he said.

“At least if we had these screenings back in place in the schools a curvature is easier detected because you’ve trained people and specialists going around to each school which there is only one in the country at the minute so we’re trying to really push for the screenings back in the school,” he added.

The group have set up a petition and have plans to send it to the new Health Minister Simon Harris.


Source : Galway Independent , 18th May 2016 

Pediatric scoliosis surgical site infection: Does metal type make a difference? 5 key notes

A new study published in Spinal Deformity examines whether the type of metal instrumentation used in pediatric scoliosis correction affects surgical site infection.

The study authors examined 874 patients who underwent 1,156 procedures between Jan. 1, 2006 and Dec. 31, 2008. The procedures took place at one of three large children’s hospitals and included at least one year follow-up. The researchers found:

1. The breakdown of metals used in the procedures was:

• Stainless steel instrumentation: 65 percent
• Titanium instrumentation: 21 percent
• Cobalt Chrome and titanium hybrid instrumentation: 14 percent

2. The overall infection risk per procedure was 6.1 percent.

3. The titanium implants had the highest risk of surgical site infection, with 6.7 percent of the patients developing SSI. The cobalt chrome patient group wasn’t far behind, with 6 percent reporting SSI. Only 5.9 percent of the stainless steel group developed SSI.

4. There wasn’t a significant difference in the metal type used between patients with and without infections when adjusting for etiology, instrumentation to pelvis and procedure type.

5. The multiple regression analysis didn’t find a significant difference in SSI between the metal groups when stratified based on etiology.

Source : Beckers Spine , 17th May 2016