My goal was to personally interview the world’s top scoliosis surgeons, brace experts and scoliosis specific rehab practitioners in the hopes of getting the most accurate information possible. Initially, access was difficult to gain but it helps to be persistent and there has been a surprising amount of momentum over the past 2 months. One thing led to another and over the past 2 months I have interviewed 10 of the world’s leading pediatric orthopaedic spine surgeons, 2 spine bracing orthotists and a scoliosis specific physiotherapist. More interviews are coming soon.
Both navigating my son’s scoliosis journey and interviewing top scoliosis experts has vastly increased my knowledge of how scoliosis starts, snowballs into severe curves and the conservative and surgical (fusion and non-fusion) options available to patients. Some non-fusion options may not be available to girls by 12-13 and boys by 15-16 years of age as they are growth dependent.
The internet is full of information and misinformation. My goal in doing these interviews was to deliver clear information directly from top experts to parents and patients so they can make more informed decisions.
Simply put, I wanted to share that knowledge with anyone who might benefit. Please forward this to anyone who might be interested. If that individual or acquaintance is uncertain how to navigate the maze that is scoliosis, just have them drop me an email and I’ll be happy to offer direction at no charge. These interviews have opened an entire network of options.
Unfortunately, these interviews didn’t get picked up on Netflix, but you can definitely binge these videos. The video interviews are posted on scoliosis forums and Facebook groups around the world. As my patient, you can access these videos or forward this email to someone else. You can also view these videos on youtube.
- Dr. Derek Lee – What Drives Scoliosis?
- Dr. Amer Samdani – Neurosurgeon, Spine surgeon, Chief of Surgery, Shriner’s Hospital For Children, Philadelphia
- Dr. Juan Carlos Rodriguez-Olaverri – Spine surgeon, Director of Early Onset Scoliosis, NYU Langone Health, New York
- Dr. Randal Betz – Institute for Spine and Scoliosis, New Jersey
- Dr. Firoz Miyanji – Spine surgeon, Department of Orthopaedics, Faculty of Medicine, University of British Columbia, BC Children’s Hospital
- Dr. Baron Lonner – Spine surgeon, Chief of Minimally Invasive Scoliosis Surgery, Mount Sinai Hospital, NYC
- Dr. Per Trobisch – Spine surgeon, Chefarzt Spine Center Simmerath & Frankfurt, Germany
- Dr. Ahmet Alanay – Spine surgeon, Professor of Orthopaedics and Traumatology Paediatric and Adult Spinal Disorders, Istanbul, Turkey
- Dr. Peter Newton – Spine Surgeon, Chief of Orthopedic Surgery, Rady Children’s Hospital, San Diego
- Dr. Bob Cho – Spine surgeon, Chief of Staff, Shriners For Children Medical Center, San Diego
- Dr. Laurel Blakemore – Spine Surgeon, Professor and Chief, Paediatric Orthopaedics, University of Florida College of Medicine
- Dr. Tony Herring – Spine Surgeon, Chief of Staff Emeritus, Texas Scottish Rite Hospital
- Dr. Jason Bernard – Spine Surgeon, St. George’s Hospital, London
- Dr. Kevin Smit – Spine Surgeon, CHEO, Ottawa
- Dr. Moyo Kruyt – Spine Surgeon, Netherlands
- Dr. Noelle Larson – Spine Surgeon, Mayo Clinic, Minnesota
- Dr. Ron El-Hawary – Spine Surgeon, Nova Scotia
- Dr. Stephan Parent – Montreal
- Dr. Yizhar Floman – Tel Aviv, Isreal
- Luke Stikeleather – Orthotist/Bracing, National Scoliosis Centers, Virginia
- Piotr Duma – Orthotist/Bracing, Shriner’s Hospital for Children, Montreal
- Andrea Lebel – Physiotherapist specializing in scoliosis, Ottawa
How to use these videos:
The average interview is 45 minutes. Start with Andrea Lebel’s presentation on scoliosis because it gives a very good summary of scoliosis in general and highlights scoliosis specific exercises. For information on bracing head over to Luke Stikeleather’s interview. All the surgeons I interviewed are excellent. Dr. Firoz Miyanji is the most experienced surgeon in Canada. Dr. Amer Samdani is my son’s surgeon surgeon. He’s one of the top surgeons in the US.
All of these surgeons work with kids and a few with adults. If you or anyone you know has questions, just ask them to reach out to me and I’ll be happy to share my experience.
Dr. Derek Lee
Scoliosis Expert Interviews
More interviews Coming Soon!
My Son’s Scoliosis Jouney
Since June is Scoliosis Awareness Month, I wanted to share my son’s scoliosis experience. The whole point of this email is to detail my family’s experience so that others can learn from our mistakes and successes to hopefully navigate the medical maze of scoliosis treatment. Please forward this to any friends or family members who you think my benefit from this information.
Later this month, I will be sharing my video interviews with one of the top scoliosis surgeons in Europe, the top scoliosis bracing expert in North America, and the most experienced scoliosis physiotherapist in Canada. I’ll also write about the mechanics of how scoliosis progresses.
Let’s start at the beginning. Twenty two months ago my son at 14 years of age, was diagnosed with a 27 degree right thoracic curve which basically looks like a ‘C’ shaped curved in his upper back. This was picked up with a chest x-ray. The x-ray was initially prescribed to confirm a case of pneumonia which was the case. Scoliosis often comes with reduction in lung capacity which makes the upper respiratory system vulnerable to pathogens.
It took 3 months to get referred to a paediatric orthopaedic surgeon who specialized in scoliosis and she recommended bracing to try and stop curve progression and monitoring to keep track of changes. It took another month to get measured and fitted for a brace.
This is when I went from trusting the medical process to going absolutely ballistic. I had no choice and started advocating for my son outside the Ontario medical system. Unfortunately, the surgeon had recommended a brace that was at least 10 years out of date and that her process for monitoring scoliosis progression was borderline incompetent. She also wasted 4 months over which time his curve had increased to 53 from 27 degrees.
When a curve passes 40 degrees and especially crosses the 50 degree threshold, it moves into surgical range which means fusion of the spine. In my son’s case, fusion would involve placing screws into the vertebrae from just below his neck all the way to his low back (T1-L3) which is basically his full spine. Two metal rods would be attached to those screws on either side of the spine to straighten the scoliosis. He wouldn’t be able to move or bend along the fused regions which means the areas above and below would take on much more stress leading to degenerative disc and joint disease and eventual chronic pain. Of course, this was an option we wanted to avoid but might have to accept if his curve continued to worsen.
We asked for a referral to Toronto Sick Kids. More on that later.
Over the next 2 months, we travelled to Virginia, USA for a modern asymmetric brace, and commuted to Ottawa to see the most experienced Schroth physiotherapist in Canada. I knew a combination of the right brace and the right type of scoliosis exercises was the only way to help slow the curve and maybe reduce the curve a little. Of course, I spoke to many colleagues throughout North America about additional conservative treatments for scoliosis which I added to his daily treatment regimen.
He wore his brace 21 hours a day and worked out 45 minutes a day every day for 9 months. He never complained.
With all that work, his curve reduced by 20% from 53 to 42 degrees which is unheard of. The vast majority of curves in the 50+ range either stay the say or most likely get worse, especially during adolescent growth spurts. Although we were happy with the result, I knew it wouldn’t improve beyond 42 degrees and with his growth spurt approaching, I started researching surgical options.
I spoke to a total of 7 surgeons around the world including Canada, the United States, Spain and Turkey in addition to other experts about non-fusion surgical options. The surgical procedure that we pursed is called vertebral body tethering (VBT). Unlike fusion, VBT maintains spine flexibility and by a process known as bone growth modulation, it corrects the curve as the child grows. At each vertebrae, screws are inserted on the convex side of the curve and a tether or cord is attached to each screw and tightened. This theoretically stops bone growth on the convex side of the curve and stimulates growth on the concave side of the curve. According to the Hueter-Volkmann Law, this will straighten the spine as the child passes through their growth spurt.
At that time, there were only 6 surgeons in Canada (I spoke to 3 of them) who performed VBT. One in Nova Scotia, 3 in Montreal, 1 in Alberta and 1 in British Columbia. There were no VBT surgeons in Ontario which means only fusion was offered in Ontario.
Remember my referral to Toronto Sick Kids? They gave my son an appointment with a physiotherapist, not even a surgeon, to assess him 11 months later. It didn’t matter because we didn’t want fusion anyway. But still, that was ridiculous.
Five months later we travelled to Shriner’s Hospital in Montreal to consult with a VBT surgeon where he was declined VBT and offered fusion. Unfortunately, many Canadian surgeon’s have narrow parameters for accepting patients as VBT candidates. From my research I knew Montreal would likely decline him VBT surgery but my back up plan was to travel to the USA which is what we did 2 months later.
My son had VBT surgery 6 months ago in Philadelphia with Dr. Amer Samdani, one of the top VBT surgeons on the planet. His curve has reduce by 50% to 25 degrees with no loss of flexibility and a 90% chance that he will NOT require fusion in the future. His curve will hopefully drop to around 15 degrees for a total of 75% reduction as he continues through his growth spurt but even a correction to 25 degrees is an excellent non-fusion result.
I would like to make several points that are very important.
- VBT is the most effective for kids that have growth remaining. So girls might be out of VBT range at 12 or 13 and a year post-menarche. Boys might be out of range by 16. For this technique, timing is critical.
- If your child is at the end of their growth spurt, there is another option called ASC which is only offered outside of Canada. For a list of surgeons and their contact information, just contact me.
- The vast majority of scoliosis surgeons are fusion surgeons. They will not even mention VBT as an option. For example Toronto Sick Kids surgeons will do only fusion surgery. To be considered for VBT in Canada, don’t hesitate to reach out to me for a list of surgeons and their contact information. Thankfully we now have 1 surgeon in Ontario (Ottawa) who now does VBT.
- Bracing can be effective for mild and moderate curves. It can slow down severe curves. If you would like trusted bracing experts, contact me for a list.
- Specific asymmetric exercises for scoliosis of all severities in children and adults can reduce pain and asymmetry. Try and see a physiotherapist that works with lots of scoliosis patients every day. An inexperienced therapist can make things worse. For physiotherapists that have scoliosis experience, contact me.
Scoliosis is personal to me. If you or anyone has any questions or concerns regarding scoliosis bracing, exercises, surgical options, which surgeons to contact or how to navigate the health care system, just contact me and I’ll be happy to schedule a phone call or trade emails at no charge. If I can save parents, their children or adults time, frustration and dead ends and direct them to the right practitioners, that’s all that matters.
A final reminder, this is Scoliosis Awareness Month and I’ll be posting my video interviews with a VBT surgeon, a Schroth scoliosis physiotherapist and a scoliosis brace expert in the coming weeks.
Dr. Derek Lee