AN UP-BEAT dancer has fought through a spinal condition to win a national title.

The results of an x-ray on Shae Santiglia’s back when she was eight showed she had scoliosis, a condition where her spine was bent out of shape.

However, the 13-year-old from Glenroy was last month crowned national under-13 hip-hop dance champion at the Follow Your Dreams National Competitions.

Doctors encouraged Shae to dance as much as she could to keep active.

When she was diagnosed with scoliosis the bend in her spine was measured at 10 degrees, and has since grown to 30 degrees, but Shae hopes with the help of doctors she can limit long-term damage.

“We are trying to prevent it from getting worse and really hurt when I’m older,” she said. “I just kind of have to know when to stop, but it doesn’t really hurt when dancing.”

Shae is planning on returning to defend her title next year.

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PHILADELPHIA (CBS) — New advances are helping teenagers with a curvature of the spine– an often hidden condition called scoliosis.

Lindsay Gordon, 19,  does planks every night. The Penn freshman has scoliosis and this is how she keeps her core and back strong.

After being diagnosed when she was 12, Lindsay wore a brace for 4 years, 20 hours a day.

Dr. John Flynn, the chief of orthopedics at Children’s Hospital of Philadelphia, says Lindsay was able to avoid surgery because it was caught early.

“That’s the problem with scoliosis, it’s kind of silent, you don’t know you have it and you can have tremendous deformity on x-ray.”

“The brace is the only thing known to man that will halt the progression of curve scoliosis in a rapidly growing kid,” Flynn added.

Dr. Flynn says braces have become more sophisticated and even have sensors to make sure they’re being worn enough.

And the other innovation is with low dose x-rays.

“We can still see the spine with the same detail to make precise measurements of the curvature and yet the radiation dose to the patient is dramatically lower,” said Flynn.

Lindsay is fine now and excited about all the innovations to treat scoliosis

“ I think it’s amazing to see that development because they didn’t have those technologies when I was first starting out,” said Gordon.


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A championship ballroom dancer who was forced to give up her passion due to a medical condition that caused her spine to be disfigured is now able to dance again following a life-changing experimental surgery that re-aligned her spine.

“The feeling when you’re on the dance floor … it’s amazing,” Anastasia Machenko, 17, told ABC News’ T.J. Holmes.

Despite being diagnosed with scoliosis, a disorder in which there is a sideways curve of the spine, according to the National Institutes of Health, Machenko said she thinks dancing is what she was meant to do.

Due to her scoliosis, however, the teen said experienced extreme pain while doing what she loved.

“It was like a stabbing. Like, a constant stabbing,” she said of the pain. “And it’s like somebody’s taking your spine and they’re literally holding it, like strangling it.”

Over the years her scoliosis worsened, and while she had the option of undergoing a fusion surgery that would permanently straighten her spine, it would have limited her flexibility so much that she would have had to give up dancing for good.

“I just didn’t want to give up,” Machenko said. “Something that you love to do … you do it no matter what.”

Despite her scoliosis, Machenko kept on dancing, aided by years of physical therapy and back braces.

In 2016, she and her partner won the National Ballroom Championships. At the time of her big win, however, her scoliosis was so disfiguring that her upper spine had a 76-degree curve and her lower spine had a 66-degree curve.

Machenko said that “many” doctors at that time told her she probably shouldn’t be dancing.

After winning the National Ballroom Championship, Machenko ultimately decided that the pain of dancing was just too much, and she said she thought that this would mark the end of her dancing career.

“It’s heartbreaking,” she said of her decision.

Shortly after, however, Machenko found Dr. Baron Lonner, a scoliosis Specialist at Mount Sinai Health Systems in New York, who offered an experimental, and not FDA approved, alternative treatment for scoliosis called tethering.

In this procedure, he attaches a flexible cord onto screws placed in the vertebrae. When the cord is tightened, it compresses the screws to straighten the spine.

“It preserves and maintains flexibility for the patient, as well as growth for those who are still growing,” Lonner told ABC News of the procedure.

Lonner stressed that while the preliminary results of tethering have been largely positive, it remains a new procedure with “some unknowns.”

“We do know our patients who are several years out are doing beautifully, but there are some unknowns,” he said. “How long will this flexible cord, this rope, last?”

“Our hope is to develop this procedure so that we will have cords that last a lifetime,” he added.

In July, Machenko underwent a full-day operation where Lonner removed four ribs and tethered her spine. Six weeks after the procedure, Machenko was a full two inches taller.

In a tearful exchange after the surgery, Machenko told Lonner: “You’ve changed my life, you’ve made it so much better, thank you so much.”

The teen told ABC News that she is now hoping to come out of retirement, and she hopes to continue dancing her “whole life.”

Machenko said she was inspired during her recovery by watching “Dancing With the Stars.” Her favorite professional dancer is Mark Ballas.

“I know every single one of his dances,” Machenko said today on “Good Morning America.” “Watching the show, it inspired me to get back.”

She added, “It [aired] around the same exact time as I was recovering and going to my physical therapist … When I came home I’d watch the show and I’m like, ‘Okay, I can do this.’”

Machenko was surprised on “GMA” by her idol, Ballas, who pretended to be an audience member asking a question.

Ballas, 31, instead asked Machenko for a hug and told her she inspired him. Machenko then had her dream of dancing with Ballas fulfilled.

“I dance on TV all the time but that was really exciting,” Ballas said. “I’m happy to be here.”

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Princess Eugenie has been secretly battling scoliosis after a tough diagnosis.

The Royal, who is set to tie the knot later this year, was forced to have corrective surgery following the worrying health news.

Rods and screws were inserted into her neck and back in order to prevent twists and curves of the spine which can affect her walk and posture.

Speaking about the gruelling operation to Royal National Orthopaedic Hospital, she previously said: “In 2002, when I was 12 years old, I was diagnosed with scoliosis, and told that I would need corrective surgery.

“During my operation, which took eight hours, my surgeons inserted eight-inch titanium rods into each side of my spine and one-and-a-half inch screws at the top of my neck.”

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For over 60 years, the Princess Elizabeth Centre in Woodbrook has served as a home for physically handicapped children.

The compound contains a modern operating theatre, dormitories, outpatient clinic, orthopaedic workshop and expansive grounds that can be used for sports and family days. The centre also offers primary schooling, occupational therapy and speech therapy.

Children with spinal and other physical disabilities from T&T and other Caribbean countries are also taken to the centre for corrective surgery.

Speaking to the Sunday Guardian after he had just performed an operation on a patient, chief orthopaedic surgeon at the centre, Dr David Toby, spoke of their labour of love, which is done free of charge.

“We have two operating sessions per week, one for scoliosis and other deformities on Tuesdays and Thursdays and two clinics where anyone can come free of charge Mondays and Fridays,” he said.

“One scoliosis surgery takes six hours compared to doing four or five other less intensive operations on Thursdays. Surgical services at the centre are free, the children’s parents are asked to make a nominal donation to the home to offset running costs compared to nursing homes. We don’t turn anybody away; if they don’t have the money they can always work out something.”

He said the centre has state-of-the-art equipment and some of the top surgeons in the world, among them Dr Vincent Arlet, Chief of Orthopaedic Spine Services at the University of Pennsylvania and Trinidad-born Dr Edward Abraham from the University of Illinois Hospital, offer their services for free. Toby said Arlet comes two or three times a year to work with him and Abraham had been coming for around 20 years.

He said the centre acts as a hub and tends to all the children who have spinal and other deformities such as cerebral palsy, Blount’s disease, spina bifida and club feet from here, Grenada, St Vincent and St Lucia.

Princess Elizabeth Centre CEO Jan Sirjusingh said there are currently 45 children at the school, which is under the purview of the Ministry of Education. She said there were some children who stayed in the home’s three dormitories, which can house 25 to 30 of them.

Sirjusingh said the children do not come from abandoned or abused homes, but from very loving families. Parents bring their children on Monday morning to school where they stay until Friday, then are taken home for the weekend. She emphasised there was very tight 24-hour security with more than 50 CCTV cameras to ensure their charges’ safety because it was a massive compound.

Sirjusingh said children from Tobago or very distant areas in Trinidad, where their parents can’t come for them every month, were also accommodated. She said the school worked with the normal curriculum and also had special education teachers. The school also has a vocational centre, but they are looking for volunteers to help teach areas like hairdressing, tailoring and art because the children are talented.

However, Sirjusingh said the teachers can do only so much, noting they can only take five or six children at a time as some had conditions such as cerebral palsy and can’t sit still.

President of centre, Dr Calvin Inalsingh, says the facility was started following a gift from the then future Queen of England, Princess Elizabeth, in 1953. Initially it offered treatment for children affected with Poliomyelitis, which was the main cause of deformities in children at that time. He said over the years polio was brought under control by efficient vaccination programmes and the centre shifted focus to surgical care and accommodation for children affected with other disabilities.

Inalsingh said the free operations were started by Dr ELS “Busta” Robertson and taken over by Toby a few years ago. He said they also started operations on children with defects of the hand through Dr Godfrey Araujo.

Noting it could be said that they had moved from a children’s home to a facility where state-of-the-art” operations are performed on children with skeletal (bone) defects, Inalsingh said they devised a strategic plan in accordance with Ministry of Health in 2010 for the centre and had followed it to the letter.

He described Sirjusingh was “God sent” to the centre, noting she goes beyond her duties to ensure the home is run smoothly and that they raise funds through donations. Inalsingh said all the board members give their service free and they were blessed to have doctors, lawyers, accountants, Rotary Club Port-of-Spain members and members appointed by the President and and Ministry of Health on the council.

He said the centre’s staff was like a family working towards the benefit of the children, but they had their problems as any other regulated family. However, Inalsingh said it was his pleasure to be associated with the centre for over 30 years and president for about 15 years.

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HealthDay News — Intravenous acetaminophen with or without ketorolac is associated with reduced opioid consumption and cost of care after scoliosis surgery in adolescents, compared with opioids alone, according to a study published online January 29 in Pediatric Anesthesia.

Vidya Chidambaran, MD, from the Cincinnati Children’s Hospital Medical Center, and colleagues modeled the cost-effectiveness of adding acetaminophen or acetaminophen plus ketorolac to opioids for postoperative outcomes in children having scoliosis surgery. Out of 106 post-surgical children, 36 received only opioids, 26 received intravenous acetaminophen, and 44 received acetaminophen plus ketorolac as analgesia adjuncts.

The researchers found that subjects in the intravenous acetaminophen plus ketorolac strategy consumed fewer opioids (difference in mean morphine consumption on days 1 and 2 post-surgery, −0.44 mg/kg), tolerated meals earlier (relative risk [RR], 0.25), and had less constipation (RR, 0.226) compared to patients receiving opioids only. In base-case analysis, use of opioids alone was both most costly and least effective, while opioids plus intravenous acetaminophen was intermediate in both cost and effectiveness, and opioids plus intravenous acetaminophen and ketorolac was the least expensive and most effective strategy. Adding intravenous acetaminophen with or without ketorolac to an opioid-only strategy resulted in savings of $510 to $947 per patient undergoing spine surgery and also resulted in decreased opioid side effects.

“Generalizing our results to the 38,000 spine fusions performed annually in the United States for patients with idiopathic scoliosis, using pain adjuncts IV acetaminophen and ketorolac could result in substantial cost savings,” the authors write.

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A WOMAN WHO is in need of complex surgery on her spine due to scoliosis will have to wait a further three months for her operation, the Dáil has been told.

Independents 4 Change TD Joan Collins raised the situation with Tánaiste Simon Coveney during Leaders’ Questions today, stating that Aisling Corcoran had rods inserted when she was a young child because she had scoliosis. 

However, in 2014, she had to have the rods removed as they were infected.

She then went on the waiting list for surgery to get rods re-inserted. The 31-year-old was assessed and put on the surgery list as a priority, the Dáil was told, and eventually, she was given a date of 5 September 2017 for her operation.

It later transpired that her surgery was cancelled by the surgeon “due to personal matters”.

Collins said that while this was a “huge letdown” for the family, these things can happen. The surgery was rescheduled for a later date.

Surgery delayed 

“Again, she underwent pre-operative assessment, X-rays and scans. It involved getting organised, getting her bags packed and anxiety. At the eleventh hour, the operation was, again, cancelled due to personal matters. This was a massive letdown mentally and physically for Aisling,” Collins told the Tánaiste.

Collins said no professional contact has been made with Aisling or her family, and no new date has been set out.

“In the meantime, Aisling’s curve is now 70%. There is a danger that her walk, structure and organs will be affected. Her life is on hold. She gets terrible spasms of pain and often ends up in accident and emergency departments or stays in bed for days. Aisling cannot plan her future,” she said, adding that Aisling, who travelled with her mother from Mayo this morning to be in the Dáil chamber, is seeking “an honest answer and expects an honest reply”.

The Tánaiste said he had been in contact with the Health Minister Simon Harris’ office, who has in turn been in contact with the hospital involved.

Coveney told the Dáil that he had received a letter from the hospital this morning confirming that the surgery will take place in three months time.

He added that Aisling’s surgery is “too complex an operation” for it to be done abroad, adding that the procedure involves two consultant doctors because of its complexity.

“One of those consultants is not available for personal reasons between now and when it can be done but we have a commitment in writing today that this procedure will take place in three months time so I hope that will give Aisling and her family some certainty,” said Coveney.

Three-month wait 

Collins told the chamber that she received the letter this morning confirming the three-month wait, adding:

I do not think it is acceptable. This is an ‘arse-covering’ exercise as far as I can see… Are we saying that patients have to wait for consultants at the consultants’ call? … Are we saying that this consultant is the only consultant who can do this surgery?
This is an emergency case. She is a priority. If it cannot be done here within a reasonable period of time, not three months because something else could happen in three months time, we should bring some expert over from London or Europe to carry out this surgery.

The Tánaiste said he accepted that nobody should have to wait four years, but said the case is not one that can be covered under the National Treatment Purchase Fund (a government fund which pays for people to travel abroad for health treatments).

“Would the Tánaiste accept waiting for four years? Would he accept his daughter walking around in severe pain for four years? It is not acceptable and the health service should be able to respond and service their patients,” she said.

Coveney admitted that the operation should have been done before now. “We are trying to ensure that it is and the procedure can take place as quickly as possible,” he said.

He highlighted that the paediatric scoliosis action plan launched last year is delivering  results, stating that 321 surgeries took place in 2017, compared to 220 in 2016, representing a 46% increase in activity.

The HSE has confirmed that it will maintain a four-month target into 2018 and beyond, he said. Coveney said he would meet Aisling and her family today to discuss her case.

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A new exercise for scoliosis patients has been introduced to Children’s Hospital.

Scoliosis, a spine deformity characterized by side-bends and rotations of the spine, is traditionally treated through observation, bracing and surgery. Until now, exercise has never been viewed as a treatment option for scoliosis. Now, Dayton Children’s Hospital in Dayton, Ohio, has taken a ground-breaking step to include Scolio-Pilates, a three-dimensional exercise program for scoliosis, to their list of treatment options for their scoliosis patients.

Scolio-Pilates is being used at the hospital in addition to the traditional phases of scoliosis treatment.  During the observation phase, Scolio-Pilates increases strength and awareness.  As opposed to what is normally a very passive phase of treatment, parents and children are given a pro-active option.  During the bracing phase, Scolio-Pilates increases strength to better maintain the changes created by the brace. And if a child eventually needs surgery, then she will be stronger going into it.

To prepare the physical therapy team at Dayton Children’s, founder of Scolio-Pilates, Karena Thek, spent 180 hours one-on-one with the therapists and their patients to make the complex corrections comprehensible.

 “It’s important that each therapist understands the logic behind the changes that we are making so that they can approach any type of scoliosis and create the changes that need to take place,” said Thek

While Scolio-Pilates approaches scoliosis in terms of all its rotations and side-bends, Thek includes additional layers to the approach. These layers include a deeper understanding of the relationship between scoliosis and connective tissue, breathing and strength through the works of Leon Chaitow, Dinah Bradley and Joseph Pilates, respectively.

“Scolio-Pilates stands on the shoulders of giants. We will continue to learn and grow by relying on the greatest science of our time,” said Thek

In September 2017, the debut month for the Scolio-Pilates program at Dayton Children’s, Ann Smith, DPT, MS, PCS, director of physical therapy at Dayton Children’s made the first public presentation of Scolio-Pilates at the hospital’s annual orthopedic symposium.

“The physical therapists and pediatricians from the community were incredibly receptive,” said Smith. “It’s so rewarding to give a talk and see heads nodding in agreement.”

And with 80 Scolio-Pilates visits in their first month, their commitment to their children is clearly being welcomed by the families they serve. In addition, Smith is kicking off Scolio-Pilates at Dayton Children’s with a one-year pilot study, followed by a 5-year longitudinal study to look at the effects of Scolio-Pilates.

Four months after the program was initiated, Terry Wiegel, Director of Rehabilitative Services at Dayton Children’s had this to say to Karena: “Thanks so much for bringing this to Dayton Children’s! It has been a huge success so far and brought our staff tons of personal fulfillment! I have a friend who spent $6,000 to send her daughter to a week-long boot camp to battle scoliosis (which failed as she did not continue the exercises). I am going to suggest she try this over the summer.”

Learn more about Scolio-Pilates at

Contact Dayton Children’s Hospital, go to:

Ed. Note: This above information was provided to KHTS by

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A regional dance champion from the West Yorkshire region who hopes to become a Professional dancer in the future is trying to raise thousands of pounds so she can have life-changing surgery to save her spine.

Millie is the step daughter of a sector professional, Danny Scargill, who runs 3 companies that support the training sector, Develop Your Staff, Diamond Advisory Services and Unicorn Recruitment.

Danny and the rest of Millie’s family are trying to spread awareness of Millie’s condition in pursuit of raising money to provide a donation for Shrines Hospital in Philadelphia who can continue to carry out VBT surgery for people around the world who are in Millie’s situation.

Millie Birch from Wakefield has recently been diagnosed with scoliosis, a condition where the spine curves and twists with no known cause.

Millie, now aged 14 is is the West Yorkshire 2016 Ballet champion and is the East Midlands Junior Modern Champion 2017 and has just been nominated for a scholarship at the International Theatre Awards in February 2019. Millie has previously appeared in West End performances, Local festive Pantomime productions and numerous shows.

Millie started her dancing career at the age of 3, but just over two months her parents were notified by her dance school that her shoulders were misaligned and advised them to visit their GP.  Her parents received the devastating news that Millie had developed idiopathic adolescent scoliosis.  This was something the family knew nothing about but on further tests it was apparent that Millie’s condition had developed to such an level that surgery is the only option.

Millie currently has a single 45 degree curve in the centre of her spine, but due to her age and current growth rate will deteriorate further as each month passes.

The specialist spinal consultant offered her an option of surgery involving the insertion of metal rods and screws to hold the spine in place called spinal fusion.  This would obviously affect her flexibility and could cause a lifetime of chronic back pain.  This would limit her future in dance and shatter her future dreams.

But after doing some research, Millie’s family found a pioneering treatment being offered in the USA and Europe where instead of rods and bars being inserted into her spine, a tether would be screwed to her spine preserving flexibility and growth.

Vertebral Body Tethering (VBT) also known as fusionless surgery is offered by a number of spinal hospitals around the world but currently not in the UK.

Now Millie’s family are trying to fundraise ahead of Millie’s surgery to secure the pioneering procedure.  A whole host of events are planned to raise funds including charity events and challenging walks on the three peaks of North Yorkshire in April.

This hospital is a charity organisation funded by donations from the public. We would love to raise as much money as possible to donate to this fantastic hospital who will hopefully be providing Millie with this life changing spinal surgery together with supporting Millies care pre surgery in travel and accommodation costs, medication costs and post operative care both in the US and back in the UK for the following years of her growth, probably until she reaches the age of 19.

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Do I want to go hiking with you? Yes. But the bigger question is, “Can I?” Will the path be steep? Is it narrow? Is it rocky? You see, these things scare me and make it difficult for me to attempt to hike, even if I truly want to join you (and I usually do).

I know, looking at me, you might not even realize there is a problem. Then I get up and walk. That’s when you see the awkward, unbalanced gait, the slight limp, and the foot drop.

Now you realize that something is not exactly right.

  • You might even what to ask. But you don’t.
  • You might feel sorry for me. Please don’t.
  • You might want to help. I am getting better at accepting that.
  • You might wonder what happened to cause me to have such a funny gait. Nothing “happened.” I was born this way.

Growing up with Charcot-Marie-Tooth disease (CMT), my parents tried to never let it hold me back. I was even in dance until I had back surgery to correct my scoliosis. According to a study in the The Journal of Bone and Joint Surgery, scoliosis is present in one-third of CMT patients. I have a stainless steel rod from the base of my neck to the base of my spine to remedy this. Because of that, certain things are more difficult, but my parents taught me to do the best I can.

Thankfully, I have friends who understand my limitations. They know that it’s not that I don’t want to go to the ball game, it is just the thought of those steep, scary steps that keep me away. They also understand that I need to use my cane when walking great distances or on uneven surfaces.

What they don’t understand is how CMT makes me feel. I don’t tell them that it makes me feel helpless when I can’t walk up the steep staircase without assistance, or when I can’t get into the pool without a railing to hold. They do not need to know how it saddens me that I cannot run and play with my son. (He understands, but it still makes me sad.)

My friends might not know how much CMT impacts my life, and that’s because I do not think they need to know. They are supportive and helpful and know that when I cannot do something, I truly can’t. I don’t use my disability as an excuse. I just live life to the best of my ability while dealing with limitations. So instead of taking the 3-mile hiking trail, I opt for the 1-mile trail. Instead of going nonstop all day, I set aside rest time that I know I will need.

So, when you ask if I want to go somewhere and I hesitate, please know it is not that I do not want to go. It is just that I need to weigh the pros and cons of the suggested activity. I do not want to hold you up or slow you down. I know in my heart that my friends probably won’t mind, but convincing my brain of that is not always easy. I ask for your understanding and support as I navigate the progression of this crazy disorder and its unknown aspects. Most of all, I want you to know how much I treasure your love and support.


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

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