Scoliosis: Keeping it in the family

In November, I mentioned that my elder daughter Ruth, aged 23, had just started on the scoliosis journey.

She's now had an MRI scan and the results are back, she read them to me over the phone (she's not long moved in with her boyfriend, another story for another blog maybe) and she has an S-shaped thoracolumbar curve, if she told me the degree of curve I didn't take it in.

I'm guessing that the reason it only showed up recently is that maybe an S-shaped curve can sort-of balance itself out appearance-wise, and what's happened now is that one of the curves has grown more than the other so that's no longer the case - does this make sense?

The physio who assessed her doesn't think she should have surgery and that she should have some sort of physio treatment. Mind you, she has a new GP now and he/she may take a different view.

This has upset me for all sorts of reasons, one of them is that I feel guilty and that it is all my fault for passing on the scoliosis. It's like I have given both my daughters something horrible. What is known about the genetics of it all? I did find this after a quick search, it dates from 2007. Is there anything more recent?

Scoliosis: Mary's Story

Mary has 3 siblings, 2 brothers and 1 sister and they live in America, Mary was diagnosed with Scoliosis when she was just 10 years old, I was 11 years old when I was diagnosed so I know exactly how Mary was feeling when she learnt that she required spinal surgery and all the hopes and dreams that seem to come tumbling around your life, my surgery was carried out in the UK.

Mary had a 75º curve compared to me with a 76º curve, we were very similar in age and curvatures, we were both diagnosed with idiopathic adolescent scoliosis.

Mary was very scared when she was told that she had Scoliosis, she would break down in tears at the very thought of scoliosis surgery, woindering if she would even be able to go through with the surgery, I am sure we are familiar with the words "why me?"

Gregory White MD - Phoenix Children's Hospital
"Scoliosis is a curvtaure and a rotational deformity of the spine, if the curve had gone un-treated then it eventually would have progressed to the point where it would have caused severe pain and ultimately could have been fatal"

Mary was fitted with a brace (unlike me) that she had to wear for 16 hours a day, she wore this for nearly 5 years! Mary was teased at school about her brace, school kids telling her she looked weird and she was crooked (I know about this all too well, I was poked and proded, I think the other kids thought I was made of something different to them!), this is a big part of living with scoliosis and one of the reasons I created the scoliosis support group, so I can help people like Mary live with Scoliosis and face the bullies at school enabling them to move on with life.

It was very hard on the family while Mary was facing Scoliosis surgery and in fact Mary's parents have said "this is one of the most challenging moments we have had in our 27 years of marriage"

Mary was scheduled for surgery 5 years after being diagnosed, unlike myself Mary was fitted with screws and small bones of the spine that go from the back of the spine past the spinal cord into the front of the spine, allowing Mary's Dr to un-rotate the spine effectively, however, the risks involved with Scoliosis surgery include paralysis and neuroloigic injury, Scoliosis surgery is not an easy surgery and those facing surgery should have no illusions that it will be easy surgery, it is very difficult, long and involved.

I did not have screws and bone fragments, I was fitted with a Harrington rod from T5 to L1.

After Mary came out of surgery Dr White was very pleased with the results of her surgery and said she had even set a personal best for Dr White, Phoenix Hospital provided Mary with the care and attention she needed during and post scoliosis surgery.

Mary has recovered very well after her surgery, and is now running on the track, playing badmin, doing gymnastics, going out with her friends and feeling normal again, Mary says she feels "free" and can do whatever she wants.

If Mary had not undergone this surgery her story may be something quite different!

Phoenix Children's Hospital
Phoenix Children's Hospital is Arizona's only licensed children's hospital, providing world-class care in more than 40 pediatric specialties to the state's sickest children. Though Phoenix Children's is one of the 10 largest freestanding children's hospitals in the country, rapid population growth in Arizona means the Hospital must grow as well. Phoenix Children's recently announced a $588 million expansion plan to bring its special brand of family centered care to even more patients and families. The plan includes a significant upgrade of the Hospital's current campus, an aggressive physician recruitment effort, and new satellite centers in high growth areas of the Valley.

Cleveland Clinic: FREE Online Health Chat

The Center for Spine Health at Cleveland Clinic, one of the United States' top hospitals and home to our nationally ranked Neurological Institute, is hosting a FREE online health chat on adult scoliosis from noon to 1 p.m. Friday, Dec. 5.

Cleveland Clinic: USA Hospital

Register for the Online Health Chat at Cleveland Clinic

During this one hour chat Douglas Orr, MD, will answer questions from patients regarding management and treatment options for adult scoliosis and other spinal deformities.

Who Is Dr Orr?

Dr. Orr specializes in spinal surgery at Cleveland Clinic’s Center for Spine Health and has a joint appointment in the Department of Orthopaedic Surgery. He is certified by the American Board of Orthopaedic Surgery and by the Royal College of Physicians and Surgeons of Canada. Dr. Orr has surgical expertise in the cervical, thoracic and lumbar spinal areas, specializing in adult spinal surgery, including minimally invasive surgery, deformity surgery and spinal tumor surgery. He also has authored numerous articles on his specialty interests and has been an invited lecturer at orthopaedic conferences and symposia throughout the United States, Canada and in other countries around the world.

Dr. Orr received his medical degree from the University of Toronto Faculty of Medicine and served his surgical internship at The Wellesley Hospital at the University of Toronto, also completing his residency training in orthopaedic surgery at the University of Toronto. Dr. Orr received fellowships in orthopaedic spinal surgery from The Toronto Hospital and from the University of Wisconsin at Madison. He also received a fellowship in orthopaedic surgery from the Royal College of Surgeons of Canada. He was appointed to Cleveland Clinic in 2003.

Dr. Orr has authored and co-authored numerous articles on his specialty interests and has been an invited lecturer at orthopaedic conferences and symposia throughout the United States, Canada and in other countries.

Center for Spine Health
Phone: (216) 363-2410
Location: Cleveland Clinic Main Campus
Mail Code Luth 2C
9500 Euclid Avenue
Cleveland, OH 44195

Orthopaedic Surgery
Phone: (216) 363-2410
Location: Cleveland Clinic Main Campus
Mail Code Luth 2C
9500 Euclid Avenue
Cleveland, OH 4419

Spinal Stapling: Morgan Stanley Hospital

Medical News Today Reported:

Morgan Stanley Children's Hospital of New York-Presbyterian is one of only a few hospitals in the country to offer spinal stapling, a new treatment alternative for young people with scoliosis, an abnormal curvature of the spine that is painful and can restrict breathing.

The Center for Early Onset Scoliosis, led by Dr Michael Vitale, sees about 400 patients per year under the age of 5 with the condition. Spinal stapling is one of a number of new techniques that promise improved outcomes.

Tens of thousands of children in the U.S. are diagnosed with scoliosis each year. When the curvature is moderate, spinal braces can be used to slow or decrease the chance of progression. Until now, however, there was no way to reverse progression and straighten the spine.

Spinal stapling is a two-hour minimally invasive surgery that involves implanting inch-long metallic staples across the growth plates of the spine. Made of a high-tech temperature-sensitive metal alloy, the staples are implanted using a camera called a thoracoscope with a very limited incision and minimal scar. The procedure is available to children with progressive moderate scoliosis (less than 30?) who are still growing (girls up to age 14 and boys up to age 16).

"Stapling not only stops scoliosis from getting worse, but can even correct the curve," says Dr. Michael Vitale, chief of pediatric spine and scoliosis surgery at Morgan Stanley Children's Hospital of NewYork-Presbyterian and the Ana Lucia Associate Professor of Clinical Pediatrics and Orthopaedic Surgery at Columbia University College of Physicians and Surgeons. "While most children do well with spinal fusion, we are on the cusp of a new era in the treatment of scoliosis. For the first time, we have a way to potentially reverse the scoliosis. "

Braces can be uncomfortable and embarrassing for children, notes Dr. Vitale. The custom-made plastic corset is usually worn all but one or two hours a day, and its tight fit presses against the stomach, making eating and any sports difficult.

Spinal fusion, too, has its drawbacks. "We recently presented evidence that spinal fusion in young children can lead to significant issues in quality of life and pulmonary function over the long term," says Dr. Vitale, who presented the findings at the International Conference on Early Onset Scoliosis in Montreal. The study followed 27 patients who received spinal fusion, which permanently connects several vertebrae. After 10 years, their pulmonary function, measured by lung volume, and reported quality of life were significantly less than that of a healthy child.

"While stapling is very new," adds Dr. Vitale "it promises to have a major effect on how we treat young people with scoliosis." Additional therapies may include:

* VEPTR. The Vertical Expandable Prosthetic Titanium Rib (VEPTR) straightens the spine and opens a larger space for the lungs and other internal organs to grow by placing a titanium brace between two ribs to push them apart. VEPTR can be expanded as the patient grows through an outpatient procedure.

* Growing Rod. Attached to the spine and affixed to vertebrae at the top and the bottom, growing rods are expanded over time using a mechanism that allows the lengthening to be performed in a simple outpatient surgery. The approach minimizes spinal deformity, and most importantly allows lung development to occur to preserve a normal life span for the patient.

Scoliosis is a musculoskeletal condition that primarily affects children and adolescents, in which there is an abnormal lateral curvature of the spine, causing the spinal column to bend to the left or right. The name is derived from the Greek word "skoliosis," which means "crookedness." Scoliosis affects approximately 3 percent of the population. The Adam's bend test is performed to gauge the amount of curvature a scoliosis patient has. Scoliotic curve is said to exist when the angle of the curve measure is at least 10 degrees. Curves of more than 40 degrees are considered severe. Most patients are diagnosed between ages 10 and 15, although those with severe cases may be detected earlier. Dr. Vitale is a proponent of school screening of adolescents for scoliosis, and authored an informational statement on the subject that was published in the January 2008 issue of the Journal of Bone and Joint Surgery. His position is shared by American Academy of Orthopaedic Surgeons (AAOS), the Scoliosis Research Society (SRS), the Pediatric Orthopaedic Society of North America (POSNA) and the American Academy of Pediatrics (AAP).

New York Presbyterian Hospital