April 6, 2017

Scoliosis


Here’s a free collection of resources on Scoliosis- Scoliosis videos, blogs, support groups, first-hand experiences and advice from people who have Scoliosis, etc.

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Scoliosis Blogs

Here’s a collection of Scoliosis blogs- written by people with Scoliosis, or about Scoliosis.

***Email alexbalinski@gmail.com to add your blog to this index.

Scoli SMART Clinics treatingscoliosis.com 2017
Scoliosis Workouts scoliosisworkouts.com 2017
Scoliosis SOS Clinics scoliosissos.com 2017
Scoliosis Treatment Alternatives scoliosistreatmentalternatives.com 2017
Hudson Valley Center hudsonvalleyscoliosis.com 2017
Dancer Girl & Cello Girl scoliosisliving.blogspot.com 2017
Louise helpformyscoliosis.com 2017
Lloyd Hey drlloydhey.blogspot.com 2017
Viviane De Doncker thedynamicspine.wordpress.com 2017
Scoliosis 3DC scoliosis3dc.com/blog 2017
Lisa Manning piscoliosisstory.blogspot.com 2017
Looking Around The Bend lookingaroundthebend.wordpress.com 2017
Nora’s Journey norasjourney-early-onset-congenital-scoliosis.com 2017
Tina & Cindy scoliosisfamilyadventures.wordpress.com 2017
Kim Wagaman yogaquest.wordpress.com 2017
The Curvy Spine thecurvyspine.com 2017
Lauryn Mitrega laurynsscoliosisstory.blogspot.com 2016
Elizabeth afterscoliosis.wordpress.com 2016
Maria Talks Back mariatalksback.blogspot.com 2016
Katie, Brace Yourself scoliosis-braceyourself.blogspot.com 2016
Reuben Cross superheroconcreteboy.blogspot.com 2016
Tyler & Tiffany ourclaire.com 2016
Laura Gustafson theinfantilescoliosischronicles.blogspot.com 2016
Jennifer Heath jackotaco.blogspot.com 2016
Scoliosis Confessions scoliosisconfessions.tumblr.com 2016
Meghan Bell mycrazycurves.com 2016
My Troubled Bones herscoliosisjourney.blogspot.com 2015
Ann Marie scoliosisfashionandbraceadvice.blogspot.com 2015
Vanessa scoliosisridingthecurve.com 2015
Garry Reid garryjr95scoliosis.wordpress.com 2015
Kevin Lau drkevinlau.blogspot.com 2015
My Healing Journey With Qigong myhealingjourneywyirenqigong.blogspot.com 2015
Lauren Grace scoligrace.blogspot.com 2014
Leigh Gould leighjenn.blogspot.com 2014
Ava Brooks scoliosis-fashion-help.blogspot.com 2014
Right-Angle Girl rightanglegirl.wordpress.com 2014
My Scoliosis Life myscoiliosislife.blogspot.com 2014
Multiple Authors scoliosisnutty.blogspot.com 2014
Ella ellasjourneywithscoliosis.blogspot.com 2014
Shari Berger scoliosisthejourney.com 2014
Jennifer Wilck scolimom.wordpress.com 2014
Emily West westscoliosis.blogspot.com 2014
Helena helenasscoliosisstory.wordpress.com 2014
Twisted Running twistedrunning.com 2014
Scoliosis Rehab scoliosisrehab.com/blog 2014
Rachael Starke savingsarahsspine.wordpress.com 2014
Bella bellasscoliosis.blogspot.com 2014
Doreen thebionicachronicles.blogspot.com 2014
Pre-Teen Scoliosis preteenscoliosis.wordpress.com 2014
Scoliosis Life thescolilife.tumblr.com 2014
Emily infantilescoliosis-diary.blogspot.com 2014
Scoliosis Fashionista scoliosisfashion.blogspot.com 2014
Nina scoliosismalaysia.blogspot.com 2014
Sami samisscoliosisstory.wordpress.com 2013
Nepsi babieswithscoliosis.blogspot.com 2013
Morgan Mahedy camahedy.blogspot.com 2013
Rhiannon scoliosisjourney.wordpress.com 2013
Rose Rawlins roserawlins.blogspot.com 2013
Jessica LaMar jessicascoliosis.blogspot.com 2013
A Curving Journey scoliosiscurvingjourney.blogspot.com 2013
Staci lifeiscrooked.blogspot.com 2013
Adrian Feirce pseudoscoliosisblog.blogspot.com 2013
Jennifer Prosser jennysscoliojourney.blogspot.com 2013
Mark Kabins markkabins.wordpress.com 2013
Ross alisonval1.wordpress.com 2013
Charlotte Ovenden charlotteovenden.wordpress.com 2013
Millie scoliosisaware.blogspot.com 2013
Galen Cranz naturalcareforscoliosis.wordpress.com 2013
Living Twisted livingtwisted.wordpress.com 2013
God’s Watching My Back godswatchingmyback.wordpress.com 2013
The Scoliosis Foundation scoliosisfoundation.blogspot.com 2012
Tiffany Fink tiffanyfink.blogspot.com 2012
Alayna scoliosissurvivor.blogspot.com 2012
Devon Napper journeyofscoliosis.blogspot.com 2012
Amanda Marie scoliosissurgerysurvivor.com 2012
Caroline itscalledscoliosis.wordpress.com 2012
Ahead Of The Curve twistedbodystraightmind.blogspot.com 2012
Hanli Kruger hanlikruger.blogspot.com 2012
Multiple Parents luckycastclub.blogspot.com 2012
Fixing My Daughter donnacaputo.wordpress.com 2012
Nathan’s Congenital Scoliosis nathanscongenitalscoliosis.wordpress.com 2012
Curved With Enthusiasm curvedwithenthusiasm.wordpress.com 2012
Dr. Sid espritwellness.wordpress.com 2012
Scoliosis Health scoliosishealth.wordpress.com 2012
Scoliosis Exercises Blog scoliosisexercisesblog.wordpress.com 2011
Scoliosis: My Story scoliosismystory.blogspot.com 2011
Halle’s Scoliosis hallesscoliosis.blogspot.com 2011
Scoliosis Prevention scoliosisprevention.over-blog.com 2011
Scoliosis Teenager scoliosisteenager.wordpress.com 2010
Jennifer thecrookedtruth.blogspot.com 2007
Darci Manley scoligirl.com 2007

We are surveying  people about their experiences with Scoliosis. Here is a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Scoliosis**


Scoliosis Symptoms

What Scoliosis symptoms have you experienced?

  • Slow to crawl. (Cade, 19 months)
  • 15 degree cervical curve; 32 degree thoracic curve; 18 degree lumbar curve. Some noticeable limitations in flexibility. No pain or discomfort. (QJP, 8 years old)
  • Back pain, fatigue. (Olivia, 13 years old)
  • Pain, curvature, breathlessness. (Teagan, 13 years old)
  • Pain and curve. (Anonymous, 13 years old)
  • Back pain like everywhere, every day. (Sydnie, 14 years old)
  • Back, neck, shoulder blade pain, hip pain, knee pain, shooting pain down left leg (this for two years leading up to fusion surgery in November 2015). (Jamie C., 14 years old)
  • Shooting pain, stiffness, ribs screeching. (Éliane, 15 years old)
  • When I was first diagnosed I didn’t even know I had it. I felt no pain and the only physical problem was that my shoulders weren’t level. (Emily W., 16 years old)
  • Back pain, twisted spine, curvy body. (Arpita, 16 years old)
  • Pain. (Jasmine B., 16 years old)
  • Tiredness, pain, shortness of breathe, aches. (Kirsty, 17 years old)
  • One shoulder is higher than the other, pain, one side of my rib cage sticks out more than the other. (Aileen C., 17 years old)
  • Neck, shoulders and lower back pain most of the time. (Arwa A., 17 years old)
  • Back pain, sickness, tiredness. (Jade M., 18 years old)
  • Very bad nerve eating rubber. (Jason, 19 years old)
  • Back pain, ribs and chest, dislocated rib, leg pain, breathing problems, tensions, shoulder pain, neck pain, headaches, psychological struggles. (Anonymous, 19 years old)
  • Pain, muscular weakness. (Giulia, 19 years old)
  • Discomfort. (Isaac M., 20 years old)
  • Back pain and uneven shoulders. (Haley, 20 years old)
  • Back pain, side pain, weakness, numbness in the legs, uneven shoulder blades and back. (Nicole G., 21 years old)
  • Just the shape of my back. (Lidia, 21 years old)
  • Before I did the surgery I used to try so hard to run, but I couldn’t, I felt as if something was stopping me and it was just the pressure on the nerves. I always had pain in my right side because it was bent. (Nadine A., 21 years old)
  • Pain, limited range of motion. (Emma, 22 years old)
  • Pain, numbness, not being able to be comfortable. (Melissa, 22 years old)
  • Pain in upper back and hips. (Anonymous, 23 years old)
  • Noticeable curve in my spine. (Rebecca, 23 years old)
  • Pain and numbness. As well as crushing feelings. (Hope, 26 years old)
  • One sided lumbar pain, shoulder and neck pain, depression. (Chelsea, 28 years old)
  • Pain almost every day. (Linnea, 29 years old)
  • Hump, pain, look, posture. (Maria F., 29 years old)
  • Back pain, sciatica, loss of sensation, swelling of knees, ankles and feet. (Courtney C., 30 years old)
  • Chronic pain, sciatica, nerve pain. (Ellen, 30 years old)
  • Low back pain, headaches, hip weakness. (Jill, 30 years old)
  • Lower back pain, uneven muscle development. (Rami A., 30 years old)
  • Sciatica. Knee pain. Hip pain. Collapsed side. (Christina, 32 years old)
  • Severe chronic pain, uneven shoulders with rib hump, stomach problems, chronic fatigue, degenerative disk disease, arthritis. (Jenn, 32 years old)
  • Pain, lack of confidence, restricted movement. (Natalie, 32 years old)
  • Pain, poor posture. (Anonymous, 33 years old)
  • Back pain, muscle pain. (Anji, 34 years old)
  • Stiffness, sciatica, migraines, muscle spasms and more. (Lacey, 35 years old)
  • None, just physical. (Denise, 35 years old)
  • Pain at the curve and throughout the right side of my body, including hip, shoulder, neck, etc. Left side weakness and pain when compensating for the right side when experiencing right side pain. (Jess, 37 years old)
  • Pain. (Carolyn S., 38 years old)
  • Debilitated by it. (Carla, 38 years old)
  • Chronic pain. (Michelle, 38 years old)
  • Pain, nerve pain, spasms in legs, falling down, bladder and bowel issues. (Paula, 39 years old)
  • I have lower back pain, right knee pain and a constant body ache all day. I’m also starting to experience a lot of neck pain. (Gail R., 40 years old)
  • Back pain, stiffness, spasms. (Cheryl, 41 years old)
  • PAIN. (Jenn, 42 years old)
  • Pain, tightness. (Lisa, 42 years old)
  • Back pain, hip pain, headaches, stiffness. (Michelle, 42 years old)
  • Lower back pain. (Samer, 42 years old)
  • Pain and poor balance. (Tracey V., 44 years old)
  • Severe pain, leg numbness, flat back syndrome. (Cheryl L., 45 years old)
  • Pain, degenerative discs, spinal stenosis, arthritis of spine, neuropathy, sciatica. (Melissa, 45 years old)
  • I have low back pain all the time with the right side of my back below my kidney area sometimes getting a sharp stabbing pain like someone is stabbing me with a fire hot poker and twisting it. My upper back doesn’t usually hurt unless I sleep on it too long. Mostly though it’s my tailbone that hurts and I especially feel it when I do a lot of household chores, etc. (Kelly, 45 years old)
  • Constant pain, fatigue, migraines, depression, anxiety. (Joanne T., 45 years old)
  • Meralgia paresthetica, headaches. (Lisa, 48 years old)
  • Muscle cramp, arthritis in joints, mobility problems, headaches. (Diana S., 48 years old)
  • Back aches. (Paula, 48 years old)
  • Severe scoliosis – bracing 7 years the Harrington rod. (Jen, 49 years old)
  • I have had scoliosis 36 years. I had surgery a year after I was diagnosed. (Lynda U., 49 years old)
  • Lower back pain 35 years after surgery. (Debbie P., 49 years old)
  • PAIN!! I have adult onset kyphoscoliosis. My body is now deformed to the point you can tell I’m crooked. My spine was perfectly straight 5 years ago. After menopause my spine started to curve. My right side torso is now caved in and my left is pushing out. My spine is in a S with a small C on the end of it. I have DDD, osteoporosis, arthritis, spondyliosis, 4 bulging discs, 3 pinched nerves, sacroiliac dysfunction, 6 bone spurs and a subluxation to name a few. I am in pain 24/7. I am on Morphine, Lyrica and Soma. I am on 16 other meds for my heart and other problems, but the ones I named are from my pain management doctor. I go in to same day surgery for injections quite regularly. Some help, some don’t. I am having to rely on my walker more and more. (Stacy S., 50 years)
  • Pain in left lumbar spine, difficulty breathing and pain in left hip. Had to use a cane to walk. (Marybeth, 50 years old)
  • Mostly pain under my right scapula. (Annie, 50 years old)
  • Back pain. (Bethe, 51 years old)
  • Pain, deformity, numbness, problem breathing. (Paula, 51 years old)
  • Lower back pain, hip pain. (Marie L., 52 years old)
  • Pain, left side weakness, depression. (Tracee, 52 years old)
  • Back pain, deformity. (Jen, 53 years old)
  • Pain, bulging disks, pinched nerves, fibromyalgia, arthritis, etc. (Melanie E., 54 years old)
  • Back pain when I’m tired. (Patrizia, 54 years old)
  • Muscular back pain and stiffness with loss of range of motion. (Deb, 56 years old)
  • Chest pain. Nerve pain. Back and leg pain. (Nancy G., 56 years old)
  • Numbness in hip, various pain and discomfort. (Lisa, 57 years old)
  • Rib cage collapsing on one side, rib hump on the other. (Lisa, 57 years old)
  • Pain, pain, pain. Mostly muscular tension from neck down all the way to my feet, back of body only. Also extreme nerve pain and numbness over the last three years, caused I believe by my last surgery, down my right leg and buttocks. Now numbness has spread to saddle area which affects my bowel issues some. All of this is due mostly to surgery and somewhat to the misalignment from scoliosis. (Karen M., 57 years old)
  • Pain, breathing issues, sleep problems. (Ellen S., 58 years old)
  • Pain, shortness of breath, flatback syndrome. (Karen K., 58 years old)
  • Diagnosed age 12, Milwaukee brace at 14. Halo/pelvic traction with first surgery and fusion T3-L5, 1980 in Cincinnati, Ohio after extreme pain developed after first baby in 1979. Developed sciatica after second and last baby in 1982 with increasing pain and discomfort with walking over the next three decades. Diagnosed with flatback syndrome due to Harrington rod and fusion from techniques that were state of the art in 1980. Had a much needed revision surgery in 2010 in Denver, Colorado with Harrington rod removal, wedge osteotomy at L3-L4 and Fusion from L5 to sacrum, L5-S1 vertebra removed and replaced with a custom “cage”, 13 pedicle screws and 2 rods attached to previous and new fusion area. My back is totally pain free, I walk upright, and so far have little to no sciatica. (Pam B., 60 years old)
  • Extreme lower back pain and sciatica. (Mary Lou, 62 years old)
  • I have Kyphosis Scoliosis which besides the curved spine it causes the body to bend forward with a hump back. I have pain constantly. (Florence, 65 years old)
  • Back pain, hump on upper left back, numbness in left leg and foot, ill fitting clothes. (Ginny H., 65 years old)
  • Pain. (Jody, 68 years old)
  • Back pain over my spine in the area where the spine bends as it curves. Muscle pain, especially in the rib hump area. Headaches. (Joan, 68 years old)
  • Chronic discomfort, tiredness doing physical tasks, inability to walk more than half a city block, need for a small lumbar pillow, need to have a chair with a back rest that slants back a bit, inability to see over the steering wheel in the car (the auto company added four inches of extra padding to the driver seat), inability to stand still for more than 60 seconds without pain and nausea. (Deanna RVB, 77 years old)

Scoliosis Causes

Is there anything you believe contributed to your Scoliosis?

  • Low tobe. (Cade, 19 months old)
  • No. Idiopathic. (QJP, 8 years old)
  • My aunt and great grandma have it. (Olivia, 13 years old)
  • No. (Teagan, 13 years old)
  • Genetics. (Anonymous, 13 years old)
  • Nope, only genetics. (Sydnie, 14 years old)
  • My dad has had it since middle school. His curves are as bad as mine, but went untreated his whole life. (Jamie C., 14 years old)
  • No, some sports make pain worse like trampolining. (Éliane, 15 years old)
  • I think it was hereditary. (Emily W., 16 years old)
  • I have crowded teeth and underbite. My scoliosis was discovered at the same time when I was having braces for my crowded teeth. (Arpita, 16 years old)
  • My Ehlers Danlos Syndrome. (Jasmine B., 16 years old)
  • Just unlucky, I guess. (Kirsty, 17 years old)
  • No. (Aileen C., 17 years old)
  • I don’t think so. (Arwa A., 17 years old)
  • My heart condition from when I was a baby. (Jade M., 18 years old)
  • No. (Jason, 19 years old)
  • Just that it could have been stopped from developing in my first back surgery. They removed a tumor and thought my spine was stabilized enough so they didn’t already fuse a short part. Well, now I am fused AND very crooked. (Anonymous, 19 years old)
  • No, my scoliosis is idiopathic. (Giulia, 19 years old)
  • My will. (Isaac M., 20 years old)
  • No. It was idiopathic. Meaning they don’t know why it occurs. (Haley, 20 years old)
  • The heavy backpacks that we used to carry for school, however my surgeon said that that is highly unlikely. (Nicole G., 21 years old)
  • Too much sports. (Nadine A., 21 years old)
  • Genetics, to some extent. (Emma, 22 years old)
  • Idiopathic. (Melissa, 22 years old)
  • I have klippel trenaunay syndrome, my grandma has scoliosis. (Anonymous, 23 years old)
  • Genetics. (Hope, 26 years old)
  • Gymnastics. Genetics. A lack of resources and knowledge when I was a teenager. If you have a teen with scoliosis, take a vacation to a place where they can see a schroth physical therapist! (Chelsea, 28 years old)
  • Genetics. (Linnea, 29 years old)
  • I had a heart surgery before its discovery, my bones are weak. (Maria F., 29 years old)
  • No. (Courtney C., 30 years old)
  • Mine is idiopathic- so no known cause. (Ellen, 30 years old)
  • A combination of genetics and environmental factors. (Jill, 30 years old)
  • Leg length discrepancy, but also bad posture from gaming for years and not doing any strength training which would have helped me build a more solid core. (Rami A., 30 years old)
  • Heavy book bags. (Christina, 32 years old)
  • Not really. Possibly genetic factors. (Jenn, 32 years old)
  • Mine is idiopathic, meaning they do not know the cause. (Anji, 34 years old)
  • A possible fall in school at 13 years old. (Lacey, 35 years old)
  • No, born with it. (Denise, 35 years old)
  • Genetics and being a waitress. (Jess, 37 years old)
  • No. (Carolyn S., 38 years old)
  • It goes back 6 generations on my Mother’s side. My mom & her twin both had the Herrington Rod put in 45 years ago. (Carla, 38 years old)
  • No. (Michelle, 38 years old)
  • Yes, my Mom was sick with cancer when I was born. I was pulled out with a surgical instrument by the doctor and they think he may have twisted my body when he pulled me out to cause the scoliosis. (Gail R., 40 years old)
  • Lack of knowledge. (Cheryl, 41 years old)
  • Genetics. (Jenn, 42 years old)
  • No..completely idiopathic as far as I know. (Lisa, 42 years old)
  • Genetics. (Michelle, 42 years old)
  • My lifestyle (jobs). (Samer, 42 years old)
  • I have Spina Bifida Occulta. (Cheryl L., 45 years old)
  • Sleeping on bean bags as a child. (Kelly, 45 years old)
  • No. (Joanne T., 45 years old)
  • As a youth I jumped from 1 meter thinking I was jumping from 2 meters. Jarred something and I couldn’t stop screaming. No one tied the two together except me. (Lisa, 48 years old)
  • I also have neurofibromatosis. (Paula, 48 years old)
  • Not sure. (Jen, 49 years old)
  • No, but my aunt had it and my niece has it, so I think it’s hereditary. (Lynda U., 49 years old)
  • I know it is hereditary. (Stacy S., 50 years)
  • Nothing contributes to Scoliosis unless you do nothing about it. (Marybeth, 50 years old)
  • No. (Annie, 50 years old)
  • Genetics. (Bethe, 51 years old)
  • Genetics. (Paula, 51 years old)
  • No. (Marie L., 52 years old)
  • Not sure, but I have some speculation. (Tracee, 52 years old)
  • Perhaps poor posture from playing a musical instrument (practice and lessons) for years. (Jen, 53 years old)
  • I just think it is idiopathic. Also, my Great-Grandmother had it. (Melanie E., 54 years old)
  • No. (Patrizia, 54 years old)
  • Tore my ACL in 2008, no prior history of scoliosis but in rehabbing my knee my hips and pelvis got off. I believe this started the slide. (Deb, 56 years old)
  • Mine is hereditary. Pregnancies and lifting babies/toddlers didn’t help. (Nancy G., 56 years old)
  • Pregnancy and menopause. (Lisa, 57 years old)
  • Not sure, but I’m interested in the theory about muscles or ligaments being tight/shorter on one side. (Lisa, 57 years old)
  • My mother smoked while pregnant. I wonder if that contributed. My grandmother had mild scoliosis which got worse when she was in her 60’s and beyond. (Karen M., 57 years old)
  • No. (Ellen S., 58 years old)
  • A grandmother with rickets. (Karen K., 58 years old)
  • Possibly Ehlers Danlos Syndrome in my family, a connective tissue disorder. (Pam B., 60 years old)
  • I was born with club feet and I think my problems are all related to how I laid in my mother’s womb. (Mary Lou, 62 years old)
  • No. (Florence, 65 years old)
  • Doctors don’t know – but I remember a bad fall backward on a trampoline in my early teens that I wonder may have had something to do with it. (Ginny H., 65 years old)
  • Different jobs I have had lifting people before hoists came into use. (Margaret Q., 67 years old)
  • No. (Jody, 68 years old)
  • Told idiopathic age 11-18. I now have read about the genetic predisposition. My mom had scoliosis and was treated with a body cast for one year in the early 1940’s. I now have a daughter and a grandson with it. Definitely genetic! (Joan, 68 years old)
  • No, I was born with it, though it was minimal in the beginning. After menopause, the curvature progressed rapidly… (Deanna RVB, 77 years old)

Scoliosis Interesting Facts

What are some interesting things you’ve learned about Scoliosis?

  • I love our doctor who we’ve been seeing since diagnosis last year (we sought multiple opinions). However, we have discovered that, at least in America, surgeons tend to have very limited to no knowledge of actual pre-surgical treatment methods. Take care to recognize the potential limitations of their expertise. For example, our doctor is extremely knowledgable about the various surgical remedies available. However, he knew nothing about the potential benefits of Schroth therapy (including how to spell it). For advice on surgical remedies, look to your surgeon. For advise on pre-surgical therapy, look to a Schroth therapist. For advise on bracing options (and there are many), look to your orthotist. With that said, understand that the onus is on _you_ to do your own research so that you know the right questions to ask of each. (QJP, 8 years old)
  • How many other people have it. (Olivia, 13 years old)
  • There are many different types of scoliosis. Everyone experiences different amounts of pain even though they have the same cobb angles. Surgeons don’t believe it causes pain. (Teagan, 13 years old)
  • It’s more common than I thought and more girls have it than boys. (Jamie Cameron, 14 years old)
  • What each degree means you need. (Éliane, 15 years old)
  • A lot of people have it, but there’s a very slim number that have to go ahead with the surgery for it. (Emily W., 16 years old)
  • No one knows the cause of scoliosis, which is interesting as well as frustrating. As I believe you can’t cure it, if you don’t know what causes it. (Arpita, 16 years old)
  • It affects more people than I thought. Loads of people also get pain and shortness of breath. (Kirsty, 17 years old)
  • That I can be strong! (Arwa A., 17 years old)
  • You need to catch it early push G.P to limit. (Jason, 19 years old)
  • That’s it’s more common for girls while kyphosis is more common for boys. (Anonymous, 19 years old)
  • The ignorance of people for illnesses that can’t be seen. (Giulia, 19 years old)
  • One of my role models, General Douglas MacArthur, had scoliosis. (Isaac M., 20 years old)
  • Scoliosis is a chronic illness. (Nicole G., 21 years old)
  • Everyone experiences it differently, even if they have similar curves. No treatment is perfect. (Emma, 22 years old)
  • That you are not the only one with it. I’ve learned the history of when it was first discovered and how they used to try and fix it, but more than often it would fail because medical has evolved more. Also, many celebrities have it. (Melissa, 22 years old)
  • The discomfort will never go away. (Anonymous, 23 years old)
  • It’s a very un-heard of thing to anybody who’s never experienced it. (Rebecca, 23 years old)
  • Doctors will tell you that it doesn’t hurt, but it truly does. It can affect every single aspect of your life. (Hope, 26 years old)
  • I’m convinced adult curvature is somewhat reversible with Schroth physical therapy and the Feldenkrais Method. (Chelsea, 28 years old)
  • Apart from what your GP tells you, people get lots of pain. (Linnea, 29 years old)
  • We are fighters, it is a disease not due to bad posture, no definite cure yet. (Maria F., 29 years old)
  • That it can cause troubles with internal organs and the nervous system. (Courtney C., 30 years old)
  • It is a debilitating condition, more have scoliosis than we realize and there’s not enough research in the UK. (Ellen, 30 years old)
  • Scoliosis starts with neurotransmitter issues that must be addressed. Scoliosis progresses with pregnancy and hormonal changes during menopause. What you eat affects how you feel. Eating inflammatory foods (processed sugar, processed white flour/pasta, GMOs, bad oils (soy, canola, corn) causes more pain. (Jill, 30 years old)
  • It is more prevalent that I thought. There are ways to make life more comfortable as a scoliosis sufferer, and it is not the end of the road with regards to being fit and healthy. (Rami A., 30 years old)
  • It’s roots are still a mystery. Can’t tell whether I was born with it or something as a kid caused it. But the most interesting is that it’s fixable! (Christina, 32 years old)
  • How challenging it is to manage. (Jenn, 32 years old)
  • They say scoliosis is a painless condition. Which I guess is true, but it’s the impact scoliosis has on your body that causes the pain. (Natalie, 32 years old)
  • You can come out the other side feeling better. Even athletes have it. (Anonymous, 33 years old)
  • Unfortunately that there are a lot of people who have it and yet there are still so many that don’t know anything about it. (Anji, 34 years old)
  • It doesn’t discriminate- males, females, young and old can be born with it, or acquire it. (Lacey, 35 years old)
  • You can have it and it not cause pain. (Denise, 35 years old)
  • It’s very common. (Carolyn S., 38 years old)
  • Nothing, the more I read, the more depressed I get, so I just take it one day at a time. (Carla, 38 years old)
  • It’s genetic. (Michelle, 38 years old)
  • How scoliosis causes mood swings due to your spine and nervous system being connected. Depending on the severity, it can affect your whole body- even your organs. (Gail R., 40 years old)
  • That technology has come a long way, also there is not a lot of talk about it in schools or testing. (Cheryl, 41 years old)
  • It is neurological, and the spine brain connection can be fixed, making the body heal itself (VERY SIMPLE ANSWER). (Jenn, 42 years old)
  • How many other people have it! (Lisa, 42 years old)
  • I didn’t realize there was such a large number of people with hardware failure after surgery until I started joining groups online. (Michelle, 42 years old)
  • Not all the people have the same kind of scoliosis. (Samer, 42 years old)
  • The treatment has not changed over the years. There are good drugs, braces and physical therapy, but the treatment is still massive spinal surgery to structurally correct the curvature. (Cheryl L., 45 years old)
  • That people have this worse than I do and I don’t know how they function. (Kelly, 45 years old)
  • Every case is different. (Joanne T., 45 years old)
  • Scoliosis shows up in all vertebrate animals. (Lisa, 48 years old)
  • Predisposition to flat back syndrome. (Jen, 49 years old)
  • How far medical intervention has come in how different corrective surgery has become. (Debbie P., 49 years old)
  • My Mom was diagnosed at two with scoliosis. That it is not just a deformation of the spine, but a dysfunction coming from the brain. (Stacy S., 50 years)
  • Didn’t realize it would affect my health in so many ways. (Marybeth, 50 years old)
  • It seems criminal the USA has not looked into less invasive approaches to Scoli-ie operations, putting rods onto spines- when Schroth exercise is what they use to help Scoli in Europe. (Annie, 50 years old)
  • Just because you have it doesn’t mean your brother, sister, mother, father or children will have it. (Bethe, 51 years old)
  • The pros and cons of spinal fusions. Lack of information and doctors who treat it. (Marie L., 52 years old)
  • That it is started in the brain and that it can be genetic. (Tracee, 52 years old)
  • It is 2016 and doctors still don’t know anything about it and aren’t particularly interested in learning about how to help patients who suffer. (Jen, 53 years old)
  • King Richard had it! So did King Tut! (Melanie E., 54 years old)
  • It’s an underhand illness. (Patrizia, 54 years old)
  • Scoliosis doesn’t have to keep progressing with a proper program. (Deb, 56 years old)
  • I’m stronger than I ever thought. (Nancy G., 56 years old)
  • That hopefully I can live a full life without surgery. (Lisa, 57 years old)
  • That there is still so much controversy about how to treat it. (Lisa, 57 years old)
  • http://science.sciencemag.org/content/352/6291/1341 (Karen M., 57 years old)
  • Treat it early in life. It will get worse. (Ellen S., 58 years old)
  • It is relentless. Our spines want to twist and turn throughout our lifetimes. (Karen K., 58 years old)
  • I am a very adaptable person due to my lifelong experience with this disability, and though it affects nearly every aspect of my day, I feel I can cope quite well. (Pam B., 60 years old)
  • There are a lot more people, young and old, with scoliosis and some way worse off than me! (Mary Lou, 62 years old)
  • It can affect various parts and organs in your body. (Ginny H., 65 years old)
  • I didn’t realize that so many people had scoliosis until I joined the group “scoliosis my back”. (Margaret Q., 67 years old)
  • Mature scoliosis cannot be reversed. (Jody, 68 years old)
  • As I have aged I have come to realize how scoliosis effects my entire anatomy and its various systems. (Joan, 68 years old)
  • It was the reason I have been “tired” all my life!!! (Deanna RVB, 77 years old)

Scoliosis Pain Relief

What are effective ways to relieve Scoliosis pain?

  • N/A with plans to keep it that way. (QJP, 8 years old)
  • Ibuprofen, stretching. (Olivia, 13 years old)
  • Painkillers. (Teagan, 13 years old)
  • Chiropractor. (Sydnie, 14 years old)
  • I still take Lyrica for the nerve pain, but I hope to get off of it soon. I took oxycodone around the clock for two weeks…then a couple times a day for about another month…then maybe twice a week for a while. I was off of Oxy by the 3rd month. Now I take Tylenol if I need to. My surgeon says no Advil/Ibuprofen for the first year. (Jamie C., 14 years old)
  • Ibuprofen. (Éliane, 15 years old)
  • Ibuprofen and STRETCHING. Lots of stretching. (Emily W., 16 years old)
  • Massage or pain relief. (Arpita, 16 years old)
  • Heat and pain killers. (Jasmine B., 16 years old)
  • I have no way of relieving pain except from the simple laying down. (Kirsty, 17 years old)
  • Just try to get enough sleep every day. (Arwa A., 17 years old)
  • Meditate and play cards. (Jason, 19 years old)
  • Heating pad, massages, stretches, cupping, acupressure, sleep. (Anonymous, 19 years old)
  • Some medicines. (Giulia, 19 years old)
  • Exercise. (Isaac M., 20 years old)
  • Laying down. Hot packs and heating pads. (Haley, 20 years old)
  • Walking helps relieve the pain. (Nicole G., 21 years old)
  • To get rest .. a lot of rest.. a good mattress helps a lot. To go to someone professional for scoliosis massages and not just anyone. Do not lift heavy weights or work more than 8 hours and of course don’t work as a waiter or something that demands you walk a lot because you have to rest. (Nadine A., 21 years old)
  • Yoga, stretching, massage, exercise, physiotherapy. (Emma, 22 years old)
  • Heating pads, kinesiology taping methods, stretching, exercise ball exercises. (Melissa, 22 years old)
  • Chiropractor. That has helped a lot. Exercising, even just walking. Massages help a lot. I like a firm mattress. I just got a foam roller to help relax muscles. (Anonymous, 23 years old)
  • I use pregablin and dosulepin, prescribed from my pain management. (Rebecca, 23 years old)
  • Ice and heat. (Hope, 26 years old)
  • Muscle relaxers. Physical therapy in the long run. (Chelsea, 28 years old)
  • Maylostain pandol osteo. (Maria F., 29 years old)
  • Nothing relieves it entirely, but aquatic therapy feels wonderful. (Courtney C., 30 years old)
  • Yet to find a way of relieving my pain. (Ellen, 30 years old)
  • Massage and chiropractic. ScoliSMART clinic treatment.  (Jill, 30 years old)
  • Stretching (hamstring and RECTUS FEMORIS), strengthening abdominal muscles and doing light hyper extensions for the lower back. Unilateral dumbbell work to even out latissimus dorsi muscles. (Rami A., 30 years old)
  • Stretching the buttock and lower spine. Also, working on ab exercises and back ups. (Christina, 32 years old)
  • I haven’t found anything that works yet. Have tried pain medications (prescription and OTC), ice, heat, physiotherapy, chiropractic, massage, acupuncture, osteopathy (just started this). All problems stemmed from my failed fusion. (Jenn, 32 years old)
  • Drugs of course. Rest. Heated shoulder and back rugs. Soak in hot bath. Tens machine gentle massage. (Natalie, 32 years old)
  • Exercise in gym and pilates. (Anonymous, 33 years old)
  • Lots of stretching and I take medicine around the clock to help me work and sleep. (Anji, 34 years old)
  • Exercise and physical therapy, swimming, heat and ice. (Lacey, 35 years old)
  • Don’t have pain from scoliosis. Back pain from lordosis. Exercises, core strength and stretching. (Denise, 35 years old)
  • Stretching, changing position, ice, pain relievers. (Jess, 37 years old)
  • Surgery and drugs. (Carolyn S., 38 years old)
  • When I’m having a bad day, nothing really helps. My leg and arm are both 3″ shorter than the right side. I ice that side all day. (Carla, 38 years old)
  • Heat, exercises, nurophen zavance for bad days. (Michelle, 38 years old)
  • My back brace. I can feel my body straighten up. I feel like a different person. (Gail R., 40 years old)
  • Rest, heat packs, patches, light stretches. (Cheryl, 41 years old)
  • Medicinal Cannabis. (Jenn, 42 years old)
  • Exercise and Advil if needed. (Lisa, 42 years old)
  • I have found that my body responds better if I stay active. I also use heating pads frequently. It seems to help keep my muscles from getting stiff and prevent neck injury. My t-spine being fused puts a lot of stress on my neck and heat seems to help relieve the tension. (Michelle, 42 years old)
  • Stretching your body. (Samer, 42 years old)
  • Cannabis. (Tracey V., 44 years old)
  • I used hot wheat bags that you microwave for back pain and to relieve the muscles. I take amitriptyline and flexerol to relax my muscles. (Cheryl L., 45 years old)
  • Pain block shots. Ice packs and heating pads. (Kelly, 45 years old)
  • Facet joint injections. Trigger point injections. Deep tissue massage. Supplements. Ice and heat. Find a balance between regular exercise and rest. (Joanne T., 45 years old)
  • Exercise, exercise and exercise. (Lisa, 48 years old)
  • Swimming. (Diana S., 48 years old)
  • Stretching, massage. (Paula, 48 years old)
  • Healthy lifestyle. Huge difference in pain levels when moved to a low meat, high vegetable diet- I was able to go off pain medications. (Jen, 49 years old)
  • I always put heat on my area which is painful. I find it really helps. Even on good days I still apply heat to keep it good. (Lynda U., 49 years old)
  • Stretching and painkillers work for me. (Debbie P., 49 years old)
  • Pain meds and resting. Gentle stretching also helps. (Stacy S., 50 years)
  • Since I’m no longer on pain meds since my surgery, I simply lay on a body pillow on my side. If it’s really bad I take hemp oil, but it’s very rare. (Marybeth, 50 years old)
  • Massage, chiropractor…and yes- Schroth! 🙂 (Annie, 50 years old)
  • Ice, heat, stretching, swimming, exercise, rest. (Bethe, 51 years)
  • Codeine, gabapentin and paracetamol. (Paula, 51 years old)
  • Conversion table, stretches. (Marie L., 52 years old)
  • Endocet, stretches, exercise and a heating pad/ice pack if really flared up. (Tracee, 52 years old)
  • Muscle relaxers, now a brace. (Jen, 53 years old)
  • Stretching and getting a good back rub from someone knowledgeable and with special cream and oils. (Melanie E., 54 years old)
  • Sit down with a pillow or lay down. (Patrizia, 54 years old)
  • Stretching, ice, heat and massage. Pain reliever if those don’t work. (Deb, 56 years old)
  • Meds. Acupuncture. Water therapy. Music. (Nancy G., 56 years old)
  • Stretching and my inversion table. (Lisa, 57 years old)
  • I use an inversion table, stretch and also a good night’s sleep always helps. (Lisa, 57 years old)
  • Exercise, medicine, topical medication. (Karen M., 57 years old)
  • Stretch, exercise, meds as a last resort. (Ellen S., 58 years old)
  • Swimming, other moderate exercise like wearing my scoliosis activity suit, heating pad, massage, hot tub. (Karen K., 58 years old)
  • NOTHING relieved sciatica except my surgery. Regular weekly deep tissue massage keeps me relatively pain free. I would not be able to cope with tight or spasming muscles without it. (Pam B., 60 years old)
  • I take Morphine. (Florence, 65 years old)
  • Ibuprofen, heat pads. (Ginny H., 65 years old)
  • Heat pads. (Margaret Q., 67 years old)
  • Stroth. (Jody, 68 years old)
  • Heat, therapeutic massage, cranial sacral therapy for headaches, Tylenol EX Strength if all else fails. (Joan, 68 years old)
  • Keep moving, stretching, going up and down stairs, not sitting too long, not standing in one place too long, swim, use an exercise bike, take walks with a walker if that helps, but never stop moving!! Stop walking around carrying weight (use a cart or dolly). Don’t carry a heavy purse. Use a fanny pack. I take a hot tub bath every morning as well. Helps to soak my back. I never drive more than an hour and a half at one time; then I stop and roam through a chain grocery store, use the restroom, etc, for a full 20 minutes, sometimes longer, before resuming the trip. (Deanna RVB, 77 years old)

Scoliosis Difficulties

What are the most difficult aspects of living with Scoliosis?

  • After the operation. (Raghad, 3 years old)
  • Bracing. Social and psychological effects of the long-term requirements for bracing. (QJP, 8 years old)
  • Pain, people not sure how to treat you. (Olivia, 13 years old)
  • The pain. (Teagan, 13 years old)
  • Having a brace and pain. (Anonymous, 13 years old)
  • Knowing that it will never get better. (Sydnie, 14 years old)
  • Pain and fatigue. (Jamie C., 14 years old)
  • All of it. (Éliane, 15 years old)
  • For me, it stinks when I sit in chairs because my shoulder blades usually get stuck on the backs. I can’t stand or sit for too long otherwise my back will start hurting at the base of my spine. It’s the little things that bother me most. (Emily W., 16 years old)
  • Back pain. (Arpita, 16 years old)
  • The pain. (Jasmine B., 16 years old)
  • Shortness of breath, unable to do PE like all the other kids, just thought I was unfit. Pain stops me from going out on days out because I know I will struggle. (Kirsty, 17 years old)
  • Carrying a heavy school bag at school. (Aileen C., 17 years old)
  • As a student having to sit for hours to study. (Arwa A., 17 years old)
  • The back pain, it was really bad. Also, I kept feeling sick a lot. (Jade M., 18 years old)
  • Curve in right hand side of body. (Jason, 19 years old)
  • It stops me from doing what I’d like to. And the psychological aspect is also quite annoying some days. (Anonymous, 19 years old)
  • The continuous pain and how your body looks like, sometimes even finding clothes can be difficult. (Giulia, 19 years old)
  • I live quite normally actually, but it will affect my attempt to join the army. (Isaac M., 20 years old)
  • Shoulder pain. (Haley, 20 years old)
  • Limited exercise and clothes not fitting on properly. (Nicole G., 21 years old)
  • I guess pain. (Lidia, 21 years old)
  • The pain after the surgery and the plates in my back that hurt so much in winter and that I can’t do sports and gymnastics anymore. (Nadine A., 21 years old)
  • Everyday pain – people not understanding. Even if the pain isn’t severe, it is there and it does affect my mood and my sleep. Limited motion, going through surgery. (Emma, 22 years old)
  • Getting clothes to fit right, sitting for long periods of time such as road trips or long classes, wearing a brace for two years. (Melissa, 22 years old)
  • Pain, and clothes not fitting right. (Anonymous, 23 years old)
  • Having to be careful with every activity you do, and controlling the pain. (Rebecca, 23 years old)
  • Getting comfortable in cars and clothes. (Hope, 26 years old)
  • Sleeping! There is no pain-free position I can fall asleep in without medication. This is by far my biggest challenge in living a normal, sane life. I used to get up and cry in the middle of the night at least weekly. I found some relief with schroth physical therapy, but it’s still not entirely under control. (Chelsea, 28 years old)
  • The lack of people’s knowledge and understanding, and of course the daily pain! (Linnea, 29 years old)
  • The hump, the pain. (Maria F., 29 years old)
  • Adjusting to mobility problems. I can’t walk, sit, or stand for long. I have to constantly change positions. I can no longer work and the waiting for social security is hard. I will be waiting three years by the time I go to my hearing. I’ve just about lost everything waiting. It’s difficult on more than just the body. It makes you feel ugly and helpless. It’s difficult to have people look at you like you should be able to do things that you know you can’t do. Then you push yourself to do them anyway and end up having to lay in bed for days after because you pushed too hard. (Courtney C., 30 years old)
  • The constant pain. (Ellen, 30 years old)
  • The pain and instability that I had in my low back and hips. Taking care of my young children was difficult before seeking out treatment at a ScoliSMART clinic.  (Jill, 30 years old)
  • Uneven muscles, chronic pain in lower and mid back. Sitting for long periods of time. (Rami A., 30 years old)
  • The mental toll it takes on you. (Christina, 32 years old)
  • Chronic pain that is limiting my quality of life, inability to get the information I need. (Jenn, 32 years old)
  • Not knowing when you may have a flare up. Not being able to do the same things or keep up with those around you. The pain experienced at the end of a fabulous day out when you wonder if it was worth it. (Natalie, 32 years old)
  • Managing pain, finding the time to exercise to manage it, working in a normal job with constant pain, managing motherhood tasks whilst having pain. (Anonymous, 33 years old)
  • Living with chronic pain. (Anji, 34 years old)
  • Discomfort in doing almost everything, random pain. (Lacey, 35 years old)
  • Appearance. (Denise, 35 years old)
  • Pain. (Jess, 37 years old)
  • Pain. (Carolyn S., 38 years old)
  • Not being able to do things with my children. (Carla, 38 years old)
  • The chronic pain. (Michelle, 38 years old)
  • Nobody can identify with you unless they have it. (Paula, 39 years old)
  • I never know from day to day what symptoms I will experience. Unbearable at times. (Gail R., 40 years old)
  • Trying to get comfortable. (Cheryl, 41 years old)
  • Lack of knowledge and awareness from people = lack of compassion. (Jenn, 42 years old)
  • Limits, giving in to the pain. (Lisa, 42 years old)
  • Being in pain, but looking “normal”, so others don’t understand. Unless I show someone an x-ray of my back, they think it’s no big deal. (Michelle, 42 years old)
  • Sitting or standing for a long time. (Samer, 42 years old)
  • Daily pain and spasms. (Tracey V., 44 years old)
  • The limitations and pain. (Cheryl L., 45 years old)
  • Not being able to stand or sit for more than ten minutes, 24/7 pain, not being able to sleep or work anymore. (Melissa, 45 years old)
  • That the older I get the more pain I have. (Kelly, 45 years old)
  • Being very restricted to what you can do, due to pain and tiredness. (Joanne T., 45 years old)
  • Pain and depression. (Lisa, 48 years old)
  • Mind says “yes” but body says “no”. (Diana S., 48 years old)
  • I’m not able to sit long, and I get uncomfortable all the time. (Paula, 48 years old)
  • Limited lifestyle pain and general feeling of unwell all my life. (Jen, 49 years old)
  • Pain, restrictions on what I can do. Clothes not fitting properly. (Lynda U., 49 years old)
  • When younger, not being able to wear fashionable clothes due to wearing full-body braces. Post-surgery, having one side of your back sticking out more than the other making finding clothes and underwear difficult to buy. (Debbie P., 49 years old)
  • That I am only 50 with three beautiful grandkids, two of whom are in my custody, and I am close to being in a wheelchair. Every day normal activities get more and more difficult. (Stacy S., 50 years)
  • Pain, breathing issues, and clothes not fitting correctly. (Marybeth, 50 years old)
  • Knowing that my curve got worse (from 15 degree to almost 40 degrees as I aged and went through having a child and perimenopause. (Annie, 50 years old)
  • Having to give your back a rest after anything you do. (Bethe, 51 years old)
  • Pain and problems breathing. (Paula, 51 years old)
  • Sitting too long or standing too long. (Marie L., 52 years old)
  • Surgeries and pain. (Tracee, 52 years old)
  • Lack of caregiver knowledge about how to STOP it. (Jen, 53 years old)
  • Back pain and the fact that it is hard to shop for clothes that are not affected by the curve and the way the clothes hang. But the pain with degenerative disk disease, formed from aging with scoliosis is the worst part. (Melanie E., 54 years old)
  • I can’t walk or sit for a long time without pain. (Patrizia, 54 years old)
  • Effecting my ability to do the active lifestyle I love. (Deb, 56 years old)
  • The pain keeps me from doing everyday activities. Limits what I can do. Have to plan things like vacations and concerts. Now on disability. (Nancy G., 56 years old)
  • The unknown. Will my curve be debilitating as I age? (Lisa, 57 years old)
  • Pain especially after standing for long periods of time, certain clothing is hard to wear, worrying about my future. (Lisa, 57 years old)
  • Pain. Constant debilitating pain. (Karen M., 57 years old)
  • Pain. (Ellen S., 58 years old)
  • Pain, lack of energy, body appearance. (Karen K., 58 years old)
  • Sitting or sleeping comfortably, tying shoes or trying to pick up something from the floor, trying to be ever cautious with activities, airplane seats and long drives, not lifting too much, etc. (Pam B., 60 years old)
  • Pain and clothes fitting properly. (Mary Lou, 62 years old)
  • The pain is the worst. Also, it is starting to effect my lungs. I am almost bent over in half, so just functioning is more difficult every day. I have lost a lot of self esteem also. (Florence, 65 years old)
  • Standing in one place or walking for long periods. (Ginny H., 65 years old)
  • Pain. (Jody, 68 years old)
  • Dealing with daily chronic pain. (Joan, 68 years old)

Scoliosis Advice

What words of advice/encouragement could you give someone recently diagnosed with Scoliosis?

  • Not to worry, there is help out there. Make sure you find a doctor that takes it seriously. No wait and see. (Cade, 19 months)
  • Take care of yourself quickly. (Raghad, 3 years old)
  • Contrary to what your surgeon may say, you can fight back. Patience and dedication to a rigid regimen is critical to successful and sustained reduction. Get your brace. Get into Schroth therapy. Adapt to the prescribed time in brace. Set a routine/program for therapy + stretching + brace. Stay the course. (QJP, 8 years old)
  • Stay positive, being negative only seems to prolong the day. (Olivia, 13 years old)
  • Keep fighting. Even though you can feel it others can’t always see it. You are bent, but not broken. Stay strong. (Teagan, 13 years old)
  • Have courage and hope. (Sydnie, 14 years old)
  • Find a support group. Ask your doctor if there is another patient they could get you in touch with. Don’t let it scare you too much, and try not to get upset if it ends up requiring surgery. Surgery isn’t easy at first, but it gets better each week. You’ll be SO happy when you’re done healing! It’s like getting a whole new life again! Oh…and…get handles for getting on & off the toilet, and a walker for the first few days at home! 🙂 (Jamie C., 14 years old)
  • Take things easy and don’t let anyone force you to do things that might hurt. (Éliane, 15 years old)
  • Everything happens for a reason. It may stink at the time but in the future something will happen and you’ll realize it was due to your scoliosis. Be brave. At times it may be scary or hard, but you have so many people there to support you and who are willing to help. Keep an open mind through the whole process and trust your doctor. They know what they are doing. If you do end up needing surgery, embrace that scar and make sure to show it off with pride :).  (Emily W., 16 years old)
  • I have nothing to advise them as I myself need advice. Every one is different. We have our limitations, such as a few countries don’t offer VBT. I WOULD SUGGEST DON’T DELAY. Don’t just wait and watch as your Dr. suggests. Do something. Push your doctors. Do exercise. (Arpita, 16 years old)
  • Stay strong and keep going, it will all be okay! (Jasmine B., 16 years old)
  • Stay strong, you’re amazing to be living this life. (Kirsty, 17 years old)
  • It’s more common than you think, you’re not the only one, it doesn’t make you weird just because you have it. 😊 (Aileen C., 17 years old)
  • Stay strong, there are a lot of people just like you out there and they know how you feel. (Arwa A., 17 years old)
  • Be brave. (Jade M., 18 years old)
  • Stay with it. Get a good surgeon. (Jason, 19 years old)
  • Really take a look at Facebook groups. And ask and exercise. (Anonymous, 19 years old)
  • Look for a good clinic and a good doctor, and be strong. (Giulia, 19 years old)
  • Never give up. (Isaac M., 20 years old)
  • Be patient. Recovery from surgery takes time. Don’t try to rush it. Don’t get frustrated. (Haley, 20 years old)
  • It is not the end of the world. Many people are diagnosed with scoliosis. After surgery I felt a much better person and I am very glad I did it. (Nicole G., 21 years old)
  • Accept yourself. (Lidia, 21 years old)
  • Do not give up- you are strong enough to pass this .. it’s just a bent, maximum you’re gonna pass a surgery and I did it when I was 11 and here I am working and studying. It’s all good. (Nadine A., 21 years old)
  • It may not be curable, but it is treatable. You can manage it! (Emma, 22 years old)
  • Keep your chin up. (Melissa, 22 years old)
  • Exercise and stay fit- that helps a lot with my pain. Seek treatment. (Anonymous, 23 years old)
  • Don’t let it get you down, there are so many people out there in the same shoes as you who you can talk to about your worries. (Rebecca, 23 years old)
  • Don’t let it define you. You are stronger than the doctors tell you that you are. You are unique, but not broken. (Hope, 26 years old)
  • One of the worst things to feel is that you can’t control how much worse the pain and curvature get. But you have more control than a run of the mill orthopedist will have you believe! (Chelsea, 28 years old)
  • You are not alone ❤️. (Linnea, 29 years old)
  • You will see the world differently, and you are the only one who will decide whether you gain from the experience or lose. (Maria F., 29 years old)
  • Don’t give up. Don’t be discouraged, keep fighting. (Courtney C., 30 years old)
  • Be strong, get all the information you can and do not be fobbed off my any DR! If you’re not satisfied with one DR then find another one and get a second opinion. (Ellen, 30 years old)
  • Seek out natural treatments first. Seek out help from a ScoliSMART clinic! It corrected my curve significantly and completely eliminated my low back and hip pain. My quality of life is so much better. Don’t wait and see if your curve will get worse before seeking help. Call a ScoliSMART clinic for a free consult as soon as you are diagnosed! (Jill, 30 years old)
  • Don’t take it as a end of your life statement. There are always ways to improve your quality of life, starting out with talking to others who share the condition and also having a positive mentality and not depressing too much. You have options. (Rami A., 30 years old)
  • Keep up with strength exercises. See a professional physical therapist and also look into ScoliClear. They seemed to have helped a lot of bad cases but they are expensive. (Christina, 32 years old)
  • Make sure you do your research, don’t take only one doctors opinion. Investigate all your options and definitely make sure surgery is your very last option. (Jenn, 32 years old)
  • Scoliosis often doesn’t have to limit your lifestyle, providing you show the condition respect. I have found that it has made me a more determined person. Don’t ignore what your body is telling you. There are a number of services out there that want to help with medical and lifestyle challenges and you don’t have to rely on the NHS. (Natalie, 32 years old)
  • Stay positive. Seek help and don’t give up. Find a good physio who really understands it. (Anonymous, 33 years old)
  • Scoliosis will change your life indefinitely, but overcoming the struggle will inspire strength. (Anji, 34 years old)
  • Try everything that is suggested to help your quality of life to be its best for you. (Lacey, 35 years old)
  • It doesn’t necessarily have to be a big deal. (Denise, 35 years old)
  • There are many things that can help with the pain and it can be corrected. (Carolyn S., 38 years old)
  • Live for each day! (Carla, 38 years old)
  • Breathe, research, talk. (Michelle, 38 years old)
  • You may be afraid at first, but you can live a healthy life. You just have to find what treatment works best for you. (Gail R., 40 years old)
  • Don’t think it’s the end of your world. Get it fixed asap and once you are better, you can resume back to your normal life, sports, etc. (Cheryl, 41 years old)
  • Listen to your own body and experiences. Scoliosis is different for each individual so what works for one person may not work for you. Do TONS of research, learn the history of scoliosis, read papers from medical journals, know your statistics. Most of all know that you are not alone, and can reach out to others. (Jenn, 42 years old)
  • It’s not the end! Your life isn’t over. (Lisa, 42 years old)
  • Don’t let scoliosis define or limit you. Stay active. I am a mom of two boys. I own my own business. I have never let scoliosis stop me from pursuing my dreams.  (Michelle, 42 years old)
  • Be strong and do not stop your life. And hope. (Samer, 42 years old)
  • Try to connect with somebody who has had treatment. You can feel so very alone when first diagnosed. Definitely look into Schroth physical therapy, as in some cases it can correct the curve or really strengthen the supporting muscles in your back. Treatment is hard but definitely worthwhile. I would love to give help and advice to newly diagnosed patients and would be more than happy for my email to be shared. (Cheryl L., 45 years old)
  • Stay positive. Get as much help as you can get so it doesn’t get worse. (Kelly, 45 years old)
  • Keep as active as possible, see a pain management specialist. (Joanne T., 45 years old)
  • You have more control over your body than you realize. (Lisa, 48 years old)
  • You can still lead a full life, you just have to retrain yourself in the way you do things. (Diana S., 48 years old)
  • Research, research, research. I probably would look at VBT as an option, also non-surgical options. (Jen, 49 years old)
  • It’s tough but manageable. Just need to find what works better for each individual. Physio Pilates really helped me. (Lynda U., 49 years old)
  • It’s not the end of the world. Accept you are different. Do loads of research on your specific diagnosis and see what different options are available. (Debbie P., 49 years old)
  • You will make it and you will adjust. (Stacy S., 50 years)
  • I would encourage people to try Yin Yoga and strengthen your core. Don’t have surgery unless it has really affected your health. I was diagnosed at 11 years old, didn’t have surgery until this year at age 50. My surgery was May 18th. (Marybeth, 50 years old)
  • We have finally found a better way to deal with Coli-Schroth Method exercise- also, know that your curve can increase with age- so keep your exercises up! 🙂 (Annie, 50 years old)
  • Don’t stop finding your happy place. (Bethe, 51 years)
  • Be stubborn and don’t let it win. (Paula, 51 years old)
  • Do your own research, decide your own treatment. (Marie L., 52 years old)
  • It is not a death sentence.. there are new and improved treatments. (Tracee, 52 years old)
  • You must be an advocate for yourself. Treat it early because it doesn’t stop “when you stop growing” or “when you hit menopause” Avoid surgery. (Jen, 53 years old)
  • It’s not the end of the world. You are not going to die from it. But do what you can early on to take care of your back. (Melanie E., 54 years old)
  • Take care of your back but live happy, it could be worse. (Patrizia, 54 years old)
  • Never give up on finding the “Right” program for you, but don’t just do nothing!!! (Deb, 56 years old)
  • Surround yourself with a support group. Be it family or friends or support group. Don’t give up or take living with it for an answer. (Nancy G., 56 years old)
  • Take charge and don’t sit and wait. (Lisa, 57 years old)
  • Be proactive early, and start some kind of treatment specific to scoliosis. (Lisa, 57 years old)
  • Exercise. Be a fanatic about exercise. (Karen M., 57 years old)
  • Get corrections done now. (Ellen S., 58 years old)
  • Do your homework, try everything that sound like it fits your particular case. Be choosy about surgery- and even choosier about your surgeon. (Karen K., 58 years old)
  • Talk with others who have had positive outcomes. It is possible to accept the diagnosis and live a healthy life without fear. If caught early, keeping as flexible and core strong as possible, otherwise I sincerely believe surgery by competent and experienced surgeons is the only way to stop the degenerative process and curvature and rotation that WILL increase with age. (Pam B., 60 years old)
  • Keep moving and check into the SpineCor brace. (Mary Lou, 62 years old)
  • There is no one right answer for everyone. Educate yourself and take control of your own body and health. (Ginny H., 65 years old)
  • Adolescent brace with Schroth, Adults Schroth. (Jody, 68 years old)
  • Read, research, get more than one opinion, give the non-invasive therapies a try first. Check into these therapies, find what is available to you. The tethering would be my first choice if surgery was the only answer. Know the long term affects in your entire body. This is the thing I wish I had known in my 20’s. However there just wasn’t the various therapies in the 1960’s. (Joan, 68 years old)
  • Do not give in (right away) to any pressure to have the horrific surgery! Try the Spine Cor brace. Check out the chiropractors at Scoliosis Systems in NYC (www.scoliosissystems.com). They travel, and they also train chiropractors in remote locations. (Deanna RVB, 77 years old)

Scoliosis Recommendations

Anything you would or would not recommend for someone with Scoliosis (exercises, braces, drugs, etc.)?

  • Exercises to strengthen back and ab muscles. (Cade, 19 months old)
  • From our experience, American standards for treatment de-emphasize therapy. I find this perplexing considering the data. The bracing and therapy combination has resulted in significant reductions to all of our child’s curves. Such results are not uncommon. (QJP, 8 years old)
  • Surgery was key for me! (Olivia, 13 years old)
  • Physio. (Teagan, 13 years old)
  • Back braces suck. They are the worst when you are a kid and everybody stares at them and when you grow and it gets too tight to where you can’t breathe and have a panic attack and your doctor is no help and sends you to therapy that made it worse, literally. (Sydnie, 14 years old)
  • It helped a lot when my mom got a 504 developed for me at my school. I’m also very happy I chose to get the surgery. I’m 9 months post-op and pretty much pain free. (I still get a little sore from time to time and I tend to get tired at the end of the day). (Jamie C., 14 years old)
  • I don’t recommend a heating pad. (Éliane, 15 years old)
  • If you’re going on a long car ride, flight, or somewhere where you have to sit/stand for a long time, take ibuprofen ahead of time and stretch a few days in advance. That helps me with the pain. (Emily W., 16 years old)
  • Exercise through swimming and biking. Never give up, and pain killers. Use of a writing slope so as not to encourage the curve further. (Jasmine B., 16 years old)
  • I didn’t do anything in particular, tried a gym ball and stuff for core muscles but soon got bored of that. (Kirsty, 17 years old)
  • I don’t recommend a back brace, I recommend surgery if you’re in pain. (Arwa A., 17 years old)
  • Make sure you keep doing exercise and if you have to get a brace wear it- although they are awful, you need to. (Jade M., 18 years old)
  • Try and persevere with brace. Do not take too many drugs and keep focused. (Jason, 19 years old)
  • No, it’s individual. (Anonymous, 19 years old)
  • Wear braces, and pay attention to your posture. If you don’t do anything for your scoliosis, it will not remain the same: it will increase. (Giulia, 19 years old)
  • Do good exercises for a few minutes, twice a day. (Isaac M., 20 years old)
  • I would highly recommend water exercises. And water aerobics. (Haley, 20 years old)
  • I recommend Pilates for people with scoliosis. If surgery was done, some contact sports should be avoided. (Nicole G., 21 years old)
  • I recommend not to do any sports, or work with consulting your doctor and not online. Get professional help so you won’t harm yourself. Especially do not do drugs- they are so dangerous for us, the scoliosis warriors. (Nadine A., 21 years old)
  • I would recommend surgery, personally, which has vastly improved the appearance of my curve and reduced my pain. I would also recommend yoga, swimming, and keeping fit generally, where possible! (Emma, 22 years old)
  • Braces. (Melissa, 22 years old)
  • Stretching, bracing helped me and prevented surgery for me, but there are many other types of treatment now other than bracing that may help more. (Anonymous, 23 years old)
  • Take things slow and listen to what your doctors tell you. You know your own body so only do what you feel comfortable with. (Rebecca, 23 years old)
  • My brace did not help. It made me miserable. Don’t let anyone push you into a life decision without doing your own research and getting second opinions. (Hope, 26 years old)
  • Never start taking opioids. I’m so glad they were never prescribed to me in my darker days before a schroth certified physical therapist moved into my state and I started regaining control of my pain and my life. (Chelsea, 28 years old)
  • Get it checked up, even if you have been treated with bracing. The curve can grow even as an adult. (Linnea, 29 years old)
  • I recommend early treatment. (Maria F., 29 years old)
  • High impact exercises are very hard on your back, but aquatic therapy is very helpful. (Courtney C., 30 years old)
  • None, as everyone has a different situation, so different things work for different people. (Ellen, 30 years old)
  • Rod and fusion surgery, braces, standard American diet. (Jill, 30 years old)
  • Depending on the curvature, heavy load compounds such as back squats and deadlifts, although these can be performed for those with mild functional scoliosis or compensatory scoliosis. (Rami A., 30 years old)
  • Just pure strength exercises. (Christina, 32 years old)
  • Would not recommend fusion- it’s trading one problem for another and often makes things worse. It was the factor that destroyed my back. (Jenn, 32 years old)
  • Everyone is different. What doesn’t work for me may work for others. (Natalie, 32 years old)
  • Take drugs if they work and reduce the pain so your back can keep functioning. Keep moving and mobile. Exercise. Stay positive. A brace is good to contain the progression in childhood but it’s important to work on posture and strengthening muscles all along. (Anonymous, 33 years old)
  • I do not recommend spinal fusion until all other options have been exhausted. (Anji, 34 years old)
  • Try anything and everything, and eliminate things that don’t work for you. Each person is different. (Lacey, 35 years old)
  • Exercise, eating healthy. (Denise, 35 years old)
  • Yoga poses and core exercises such as crunches. Walking/running for a long period of time, driving, sitting or lying in one position for extended periods. (Jess, 37 years old)
  • Drugs and surgery. (Carolyn S., 38 years old)
  • Listen to YOUR body. What helped one person may not help another. (Carla, 38 years old)
  • Don’t have surgery, unless it’s absolutely necessary. (Michelle, 38 years old)
  • Exercise helps my muscles tremendously. Also I have a back brace that I wear throughout the day. Hot baths and ibuprofen help too. (Gail R., 40 years old)
  • Exercises to keep your stomach muscles and back muscles strong. Bracing did not reduce my curve. (Cheryl, 41 years old)
  • Wait and see, bracing, surgery. (Jenn, 42 years old)
  • I would recommend exercise and pursuing all avenues prior to surgery. (Lisa, 42 years old)
  • I was told surgery was my only option. I wish there had been other options offered that could have been tried. Maybe I truly was not a candidate for alternative methods. Make sure you exhaust all avenues before surgery. Even though I have had good results with surgery, I still think it should be a last resort. (Michelle, 42 years old)
  • Use pain killers only if you have a lot of pain. (Samer, 42 years old)
  • Everyone is different, but pilates and biokinetics really help. (Tracey V., 44 years old)
  • If you can avoid the drugs, that’s good. I recently started Schroth physical therapy. It’s amazing and is a programme specifically for scoliosis patients. (Cheryl L., 45 years old)
  • Heat, massage, pain meds, injections, essential oils. (Melissa, 45 years old)
  • That’s not for me to tell you other than go with what works best. I’m not a doctor. (Kelly, 45 years old)
  • Everyone is different. (Joanne T., 45 years old)
  • Avoid surgery. (Lisa, 48 years old)
  • Exercises help, braces suck, but wear them- you will feel better. (Paula, 48 years old)
  • Would recommend diet as it changed my level of pain, and I was able to go drug free. (Jen, 49 years old)
  • I would highly recommend physio pilates. (Lynda U., 49 years old)
  • Don’t limit yourself with the things you can do. We are more than capable of doing anything even though we may have to adapt how we do it. (Debbie Paterson, 49 years old)
  • I would never recommend a brace. It will make your muscles weaker. (Stacy S., 50 years)
  • Drugs are just bandaids and destroy other organs. I wore a brace in my teens which did nothing for my Scoliosis. (Marybeth, 50 years old)
  • I would highly recommend looking into the Chenaux Rigeau brace, the SpineCor brace and also-learning the Schroth method exercise. (Annie, 50 years old)
  • It is always a personal decision. The more exercise you do, the better off you will be. (Bethe, 51 years old)
  • No, we are all different. (Paula, 51 years old)
  • I would recommend exercises. (Marie L., 52 years old)
  • Surgery should be the very last option. Try everything else first! (Tracee, 52 years old)
  • Exercise, bracing (not hard). (Jen, 53 years old)
  • Get surgery young if you need it. Aging w/ back problems is bad. Yoga, exercise, TAKE CARE of your back and don’t lift big boxes. Take CARE. (Melanie E., 54 years old)
  • Nothing. Each case is different. (Patrizia, 54 years old)
  • Get on a really good exercise program!! Surgery is a last resort not a first. I recommend ScoliSmart! (Deb, 56 years old)
  • You do whatever helps. (Nancy G., 56 years old)
  • Haven’t tried many different treatments at this point. (Lisa, 57 years old)
  • Keep your core strong and exercise. (Lisa, 57 years old)
  • Prior to surgery, seek out Schroth physical therapy or other scoliosis-specific physical therapy or swim and be extremely diligent to DO THE WORK TO STAY STRONG. Keep the muscles along the spine in tip-top shape. SURGERY IS LAST RESORT. And get at least two surgical opinions. Do your research on the surgeons out there. Be willing to travel for a skilled surgeon. (Karen M., 57 years old)
  • Avoid pain meds as much as possible. (Ellen S., 58 years old)
  • Stay in the best shape you possibly can. (Karen K., 58 years old)
  • I am all for surgery, especially in this age of much better surgery techniques and amazing corrections of curvatures, which is SO much better than in previous generations! (Pam B., 60 years old)
  • I am excited about getting the SpineCor brace. I have talked to and watched many videos of people with the brace and it has helped them tremendously. Also I feel stretching and yoga help us to stay limber. (Mary Lou, 62 years old)
  • Definitely keep moving as long as you can. Pilates stretch and yoga stretch help lengthen and strengthen muscles. I’ve never worn a brace or had surgery. I don’t take prescription pain killers. I do take ibuprofen most days. (Ginny H., 65 years old)
  • I do not recommend Yoga (some poses aggravate the condition). Running, jumping rope. (Jody, 68 years old)
  • Exercise, therapeutic massage and cranial sacral therapy, heat, Tylenol extra strength (I refuse to take narcotics unless there is NO other recourse). (Joan, 68 years old)
  • The Spine Cor brace!! Yoga, the Schroth Method. I do not take any drugs!!! (Deanna RVB, 77 years old)

Scoliosis Surgery Stories

What has been your experience with Scoliosis surgery?

  • N/A with plans to keep it that way. (QJP, 8 years old)
  • Surgery, went from 68 degrees to 10 degrees. (Olivia, 13 years old)
  • I haven’t had surgery, but I am considering it. (Teagan, 13 years old)
  • My surgery ended up being 13 hours. They were done after 7 hours, but then my left leg was suddenly paralyzed. They had to go back in to try and find the problem and re-check all of the hardware. My leg eventually moved, but it remained to be my weaker leg for a few months. I also ended up with some minor nerve damage that made my whole torso feel like there were needles of fire all over my skin. It is still healing and almost back to normal now at 9 months post-op. I started physical therapy about 3 weeks after surgery. I went twice a week for the first 5 months…it really helped! Even with the few complications I had, I’m still very happy I chose surgery, and I would do it all over again in a heartbeat! I LOVE not being in daily pain anymore. (Jamie C., 14 years old)
  • I had an 8.5 hour surgery and was in the hospital for a week recovering. My doctor was INCREDIBLE and so kind through the whole process. He really kept me comfortable and kept me informed on everything. I can’t remember most of it because I was pretty drugged up, but I do know it was the most pain I had ever been in in my life. (Granted I was only 11 years old at the time, but still). I remember lots of X-rays and people in and out of my hospital room. I had a button that gave me morphine in my IV. It only dispensed so much but I didn’t know that and just hit the button whenever something hurt. I was told in a few hours I had hit it 200 times and only got it 5 times. A few days in they made me start trying to walk and that was very hard. It hurt and I felt like a baby learning to walk. My dad would help me walk down the hospital hallways and each day I would go a little farther. Overall, it was very painful, but everyone was kind and helped me. The recovery process was a whole year of no sports or strenuous activity. That kind of sucked but it led to me becoming an avid reader! I discovered the site, Goodreads, and met some independently published authors on there. I even got to talk to some and I am still friends with a lot of them five years later. (Emily W., 16 years old)
  • I will have surgery in 18 months time. (Arpita, 16 years old)
  • Very hard and long road to recovery although I’m getting there. (Kirsty, 17 years old)
  • Painful and a little scary, but worth it in the end. 😊 (Aileen C., 17 years old)
  • Very good. (Jason, 19 years old)
  • It was painful and failed, I couldn’t be corrected because of all the stiffness. Now I will have my third surgery in October by a specialist. (Anonymous, 19 years old)
  • It was long. It took forever to recover. (Haley, 20 years old)
  • The first few days after surgery were very painful, my side in particular was very sore. However after a month I was back to my usual self and after the 6 month recovery period I could never have been better. (Nicole G., 21 years old)
  • It was hard the first two years especially because I was a ballerina and a gymnastics player and I was too young to understand (I was 11). Then it was all good, but I grew up and the plates became too tight and still now (I’m 21 years old), I suffer pain because of the pressure on my spine. In the cold weather my back hurts so much if I get cold that I can’t move for two days. (Nadine A., 21 years old)
  • Generally positive – I had surgery in 2010 age 16 and my curve went from almost 70 degrees to about 20, and my back now appears almost completely straight! However, I do have some pain still. (Emma, 22 years old)
  • Painful at the time, but with the right help and support you can have a better recovery. (Rebecca, 23 years old)
  • Painful, the rods are taller than me, popping up, but it has stopped the curve from increasing. (Maria F., 29 years old)
  • Too much surgery (had three so far and awaiting my fourth – three could have been very easily prevented). (Ellen, 30 years old)
  • I’m very thankful I did not choose surgery. (Jill, 30 years old)
  • Terrible. It destroyed my quality of life and created long-term chronic pain problems. (Jenn, 32 years old)
  • My surgery was life-changing. Without it I wouldn’t be continuing such a normal lifestyle. I had my surgery young, which I would always recommend. You recover quicker and grow up with it being part of you and an acceptance. (Natalie, 32 years old)
  • I’m 20 years post op and have newer hardware (not the Harrington rod) and they have failed to hold up. They are now broken in 4 places. This is why I can’t recommend spinal fusion, mine has caused me tremendous pain. (Anji, 34 years old)
  • I reached the point where my curves had gotten worse in my 20s and I was not able to work and support myself well without major pain and discomfort. Surgery was the only option. With surgery comes a whole different world of limitations that you need to be aware of before doing it. Even still, I wouldn’t change my mind. (Lacey, 35 years old)
  • My spine is almost straight! I had a 50 degree and an 80 degree curve, very severe! (Carolyn S., 38 years old)
  • Snapped Harrington rods. (Paula, 39 years old)
  • My doctor had my parents talk with two men when I was younger, one who had surgery and one who didn’t. They were afraid and didn’t want me to have it. I wonder what my life would be like If they agreed with surgery. Would I be better off today or worse? I will never know, but I have learned to accept their decision. (Gail R., 40 years old)
  • I had a great surgery- no complications. The sooner you’re up and moving, the better it is for you. (Cheryl, 41 years old)
  • Surgery is NOT AN OPTION. (Jenn, 42 years old)
  • I had surgery 24 years ago with great success. Although, I now fear I may have hardware issues/need surgery again. It was NOT stressed to me when I had the surgery that it was not a lifetime fix. (Michelle, 42 years old)
  • Very painful…It is an experiment, not a cure for scoliosis…at least for me. (Samer, 42 years old)
  • Can’t operate- have spondylosis on 4 levels as well. (Tracey V., 44 years old)
  • I have had multiple surgeries to correct my scoliosis as well as to correct some of the issues associated with Spina Bifida. It is hard, but if successful, can literally transform your life! (Cheryl L., 45 years old)
  • Never had surgery or bracing. (Kelly, 45 years old)
  • Harrington rod surgery- bad in the long term. Causes early onset arthritis. Disc degeneration. I had an H rod surgery, but still have upper scoliosis, so in the long run this surgery caused more problems than it solved! I’m in a lot of pain now. (Joanne T., 45 years old)
  • Harrington rod at age 13. Removed 9 months later due to protruding from back. (Lisa, 48 years old)
  • I had surgery in 1980- Harrington rod in place, I get lots of neck and lower back aches. (Paula, 48 years old)
  • It heavily impacted my life. (Jen, 49 years old)
  • I had the rods put in, in 1981. I wore a plaster Paris brace constantly for 9 months. The rods were taken out again in 1998 as they were sticking out at the top of my back. Had no major problems until two years ago wear & tear started causing problems in my lower back when two disks went. Thankfully I’ve just gotten through it thanks to my physio and Pilates, which I do weekly. (Lynda U., 49 years old)
  • I have not had surgery yet but I need neurosurgery. My Mom had 3 surgeries, each one 2 weeks apart and it was horrible. That was back in 1989 and she was 45. She passed away at 60 because she got pneumonia and did not have the lung capacity to survive. I do not believe the surgery helped her at all. She had the Harrington Rod put in. (Stacy S., 50 years)
  • The first two weeks were terrible. The surgeon changed my pain meds. You must keep moving as much as you can without over doing it. Get off the pain meds as soon as possible. Swimming exercises with legs and arms. Also walking is also great to keep your strength and balance. (Marybeth, 50 years old)
  • I have not had surgery yet. Two of my three daughters have and they are very happy with their decision. (Bethe, 51 years old)
  • 1977 Harrington rod. (Paula, 51 years old)
  • Have not had it, but my son who also has scoliosis is set for (undecided still) surgery next summer. (Marie L., 52 years old)
  • It’s hard… the recovery time can be pretty brutal. (Tracee, 52 years old)
  • None. I should have had it as a teenager, but they braced me instead. (Melanie E., 54 years old)
  • No surgery (yet). (Patrizia, 54 years old)
  • First time surgery left no pain, but surgeon didn’t do fusion properly and rods were placed too long. After car accident the rods became infected and then removed. Second surgery couldn’t fix all the pain and problems the first surgeon left me with, but did help correct some of the curve. Then due to medications I developed glaucoma in one eye, acute pancreatitis and then thyroid disease. (Nancy G., 56 years old)
  • Horrible. I was allergic to the hardware but the doctor didn’t believe that. Long story, but I had the first surgery as a teen. 9 vertebrae fused. Then a revision after the fusion failed at age 40. Fused T2-S1. Then hardware removal. Then another failed fusion. Then hardware removal in which surgeon must’ve punctured the spinal arachnoid lining because I now have arachnoiditis which is very painful. (Karen M., 57 years old)
  • Didn’t have it, I wish I had. (Ellen S., 58 years old)
  • Halo femoral traction followed by a single Harrington Rod, then 9 months in a body cast. 1976, Columbia Presbyterian Hospital, Dr. Hugo Keim. (Karen Knust, 58 years old)
  • See above. I feel grateful. (Pam B., 60 years old)
  • I have had no surgery. (Margaret Q., 67 years old)
  • I did the research and declined the surgery, even on the recommendations of two surgeon specialists that I consulted. They said if I don’t have chronic pain (I have only chronic discomfort and constant fatigue), maybe I would not want to have the surgery. I’m so glad they said that. With the surgery, there is no going back, and there is so much recidivism, screws coming loose, etc., more and more surgeries. Plus, the surgery cannot do the entire correction needed, but possibly only 30%. Then you’re stuck with that, for the rest of your life, as fusion is involved… (Deanna RVB, 77 years old)

Scoliosis Resources

What specific Scoliosis resources have you found most helpful?

  • Facebook groups. (Cade, 19 months old)
  • Her doctor. (Raghad, 3 years old)
  • UPMC Schroth therapist and orthotist. Social media support groups. (QJP, 8 years old)
  • Curvy girls, other forums. (Olivia, 13 years old)
  • None. (Teagan, 13 years old)
  • Saint Louis Children’s Hospital. (Anonymous, 13 years old)
  • Scoliosis support groups on Facebook and my surgeon introducing me to a girl who was 6 months ahead of me for surgery. Being able to talk to her and ask questions was awesome, and my mom was able to talk to her mom as well. (Jamie C., 14 years old)
  • Nothing that I’ve tried. (Éliane, 15 years old)
  • My orthopedic surgeon has been my most helpful resource, but I also read lots of stories of kids going through the same thing I had gone through. (Emily W., 16 years old)
  • Massage. (Arpita, 16 years old)
  • Pain killers. (Jasmine, 16 years old)
  • A Facebook group of loads of people with scoliosis talking about their experiences. (Kirsty, 17 years old)
  • Teachers understanding it and Facebook support groups. (Aileen C., 17 years old)
  • The internet and social media. (Arwa A., 17 years old)
  • The NHS website and speaking to other people helped me to not be as scared about surgery as I was. (Jade M., 18 years old)
  • Attending professional people and talking to family. (Jason, 19 years old)
  • Facebook groups. My doctors never told me that much. (Anonymous, 19 years old)
  • The private clinic where I have been cured since I was 13 years old. (Giulia, 19 years old)
  • Simple stretches and exercises. (Isaac M., 20 years old)
  • Internet and blogs. (Haley, 20 years old)
  • Cross body bags instead of back packs, toilet booster, bath board, carrier with wheels, a good back support pillow. (Nicole G., 21 years old)
  • Internet. (Lidia, 21 years old)
  • The internet and two doctors who helped me so much. (Nadine A., 21 years old)
  • Online support groups and forums – talking to other people with scoliosis. Books. (Emma, 22 years old)
  • Kinesiology taping, physical therapy. (Melissa, 22 years old)
  • Hydrotherapy after my second operation. (Rebecca, 23 years old)
  • Fellow scoliosis warriors. (Hope, 26 years old)
  • Schroth physical therapy, Feldenkrais Method and long term muscle relaxer use. (Chelsea, 28 years old)
  • Internet forums and research journals. (Linnea, 29 years old)
  • Support groups. (Maria F., 29 years old)
  • Physical therapy helps me some, but the pain comes back by the end of the day. (Courtney C., 30 years old)
  • None. (Ellen, 30 years old)
  • Chiropractic, massage, ScoliSMART clinic treatment, clean eating diet.  (Jill, 30 years old)
  • Isometric resistance training, physio therapy and stretching. (Rami A., 30 years old)
  • Exercises that elongate and stretch the spine like Pilates and Yoga and especially dance. (Christina, 32 years old)
  • Internet forums, other experience stories (which is why I have collected a number of stories in “Voices of Scoliosis”). (Jenn, 32 years old)
  • Scoliosis Association and Facebook groups. (Natalie, 32 years old)
  • Prodige back programme in Geneva – strengthening the back through exercise and pilates. (Anonymous, 33 years old)
  • Youtube for yoga stretches for the legs. (Anji, 34 years old)
  • Chiropractic care, acupuncture, exercise, massage. (Lacey, 35 years old)
  • Exercise. (Denise, 35 years old)
  • Physical therapy helps some. (Jess, 37 years old)
  • Spinal fusion. (Carolyn S., 38 years old)
  • Websites/groups here on FB. (Carla, 38 years old)
  • Exercise psychologist. (Michelle, 38 years old)
  • None. (Paula, 39 years old)
  • The Facebook pages are helpful, so is the internet. Also information from my doctor. (Gail R., 40 years old)
  • Nothing. (Cheryl, 41 years old)
  • People sharing stories. (Jenn, 42 years old)
  • The Facebook forum/group. I was diagnosed and had surgery at a time when there really wasn’t support. I didn’t know anyone else who had surgery at the time. I felt very alone and never spoke of it. I think social media allows people to come together and offer support, which is wonderful. (Michelle, 42 years old)
  • Physical therapy. (Samer, 42 years old)
  • Biokinetics and cannabis. (Tracey V., 44 years old)
  • Schroth physical therapy is amazing! (Cheryl L., 45 years old)
  • None. (Melissa, 45 years old)
  • I started going to the gym to lose weight. And sitting in the hot tub with jets pulsing on those areas helps. I have also been getting pain block shots in my lower back. (Kelly, 45 years old)
  • Facet joint injections. Deep tissue massage. Acupuncture. (Joanne T., 45 years old)
  • Physical exercise. (Lisa, 48 years old)
  • Websites. (Paula, 48 years old)
  • Healthy living and diet, active lifestyle, good weight management. (Jen, 49 years old)
  • Physio really helps my muscles. I get dry needling done. (Lynda U., 49 years old)
  • My walker, pain medications and spinal injections. (Stacy S., 50 years)
  • Yin Yoga, talking to other people who have Scoliosis. Support from family and friends. (Marybeth, 50 years old)
  • I did wear the Spinecor Brace which helps, but must be done with Schroth method. (Annie, 50 years old)
  • Facebook. (Bethe, 51 years old)
  • Pain killers. (Paula, 51 years old)
  • Scoliosis websites: setting scoliosis straight, Facebook groups. (Marie L., 52 years old)
  • Support system from friends and family. (Tracee, 52 years old)
  • Not very many. (Melanie E., 54 years old)
  • To lay down. (Patrizia, 54 years old)
  • The ScoliSmart program, PT, massage. (Deb, 56 years old)
  • Meds. Pool therapy. Acupuncture. Friends and family support. (Nancy G., 56 years old)
  • Online websites. (Lisa, 57 years old)
  • Various sites on the internet. (Lisa, 57 years old)
  • Pain management via meds, topical creams, exercise. I’m diligent about maintaining a healthy weight and proper nutrition. (Karen M., 57 years old)
  • Swimming and walking. (Ellen S., 58 years old)
  • Physical therapy, Scoliosis Activity suit. (Karen K., 58 years old)
  • Long handled grabbers and an extra long shoe horn! (Pam B., 60 years old)
  • Yoga, stretching exercises, eating a clean diet. (Mary Lou, 62 years old)
  • I was diagnosed at 60 and it is progressing very quickly. More or less, my doctor says there is really nothing to be done. Two doctors said they would not even attempt surgery. (Florence, 65 years old)
  • Facebook support groups, ortho surgeon advice. (Ginny H., 65 years old)
  • Schroth. (Jody, 68 years old)
  • The Spine Cor brace keeps me comfortable from morning to night! I am so glad I discovered it, and the chiropractors out of NY (Scoliosis Systems) who treat with it. I also do yoga daily. (Deanna RVB, 77 years old)

Scoliosis Support Groups

Scoliosis Support Groups On Facebook

  1. Scoliosis Warriors Group (14,726 members)
  2. Scoliosis Facebook Group (11,732 members)
  3. Scoliosis Cures and Pain Relief Group (3,949 members)
  4. ADULT SCOLIOSIS Group (2,968 members)
  5. Help Fight Scoliosis Group (2,437 members)
  6. Curvy Girls Scoliosis Parent Support Group (2,377 members)
  7. Scoliosis: whole body vibration and all spinal deformities rehabilitation group (2,353 members)
  8. YOGA EXERCISES FOR SCOLIOSIS:  WHICH ONES TO AVOID Group (2,214 members)
  9. SCOLIOSIS UK Group (2,052 members)
  10. Severe Lumbar Scoliosis: Whole Body Vibration and Decompression Group (2,042 members)
  11. One partner with Scoliosis and the other partner without group (2,028 members)
  12. Spinel fusion patients without instrumentation, Lumbar Scoliosis W.B.V. Group (1736 members)
  13. Scoliosis Philippines Group (1,723 members)
  14. THE SCOLIOSIS ASSOCIATION, INC. Group (1,565 members)
  15. Schroth Method for Scoliosis Group (1,426 members)
  16. SCOLIOSIS living with chronic back pain and depression group (1,401 members)
  17. Scoliosis Ireland Group (1,221 members)
  18. Scoliosis Tethering (VBT) Support Group (1,181 members)
  19. SCOLIOSIS LORDOSIS KYPHOSIS Spinal Deformity Group (1,118 members)
  20. Malaysia Scoliosis Support Group (1,055 members)
  21. SHIFT Scoliosis – Share & Support Group (1,049 members)
  22. Early Onset Scoliosis & Mehta Casting Group (1,024 members)
  23. Scoliosis- LOVE MY BACK! Group (1,016 members)
  24. Scoliosis: Inspire & Inform Group (1,012 members)
  25. Malaysians With Scoliosis Group (913 members)
  26. SCOLIOSIS divorced family courts criminal charges group (872 members)
  27. Scoliosis and social isolation Group (868 members)
  28. THE IMPACT OF SCOLIOSIS ON THE PEOPLE LIVING WITH IT AND THEIR FAMILIES Group (858 members)
  29. Scoliosis Treatment with Whole Body Vibration Group (856 members)
  30. SCOLIOSIS kids, teens and adults group (847 members)
  31. Severe adult scoliosis and clear method and Schroth Method. Group (791 members)
  32. Curvy Girls Scoliosis Support Groups (728 members)
  33. SpineCor Brace and Scoliosis Support Group for everyone all over the world group (609 members)
  34. Egyptian Scoliosis Group (578 members)
  35. SCOLIOSIS patients living with Throacic or Lumbar curves over 70 degrees group (561 members)
  36. Severe adult scoliosis Group (550 members)
  37. Bullied Because Of Scoliosis- Led to adolescent and adulthood depression group (537 members)
  38. Congenital Scoliosis Support! Group (509 members)
  39. Scoliosis Treatment Support – SpineCor & Schroth Group for Scoliosis Group (495 members)
  40. SCOLIOSIS – A Voice Group (445 members)
  41. Scoliosis Parents Support: Strength In The Curve Group (398 members)
  42. Failed Scoliosis Surgeries. Group (395 members)
  43. SCOLIOSIS PATIENTS THAT SUFFER WITH CURVES ABOVE 90 DEGREES Group (380 members)
  44. Scoliosis Awareness and Support Ireland Group (320 members)
  45. Scoliosis in Egypt Group (318 members)
  46. Australians With Scoliosis Group (297 members)
  47. Scoliosis Mood Swings And Depression Group (283 members)
  48. SCOLIOSIS quality of life (self image, self esteem, self confidence) Group (275 members)
  49. MAGEC rod (magnetic Growing Rods For Scoliosis) Group (238 members)
  50. North Bay SCOLIOSIS WARRIORS Group (206 members)
  51. Early Onset Scoliosis Parent Support Group (186 members)
  52. Distant Healing Group for Scoliosis Group (171 members)
  53. Scoliosis –Spinal Fusion & Fighting Flatback Syndrome Group (164 members)
  54. Australia CG Scoliosis Parents Group (160 members)
  55. Scoliosis Advocacy Ireland Group (149 members)
  56. SCOLIOSIS New Technology Chiropractic and Integrated Treatment Group (132 members)
  57. Flexible Fusion & Scoliosis Support Group (131 members)
  58. Early Onset Juvenile Scoliosis Support Group (125 members)
  59. PWS Scoliosis Forum Group (121 members)
  60. Scoliosis Association UK (Scotland) Group (113 members)
  61. Scoliosis Awareness & Support Group (Plus fundraising for SAUK) Group (110 members)
  62. SCOLIOSIS RELATED Group (106 members)
  63. Treating Scoliosis Group (101 members)
  64. Scoliosis Support Group (98 members)
  65. SCOLIOSIS Whole Body Vibration Therapy: an important asset to Chiropractors Group (98 members)
  66. Scoliosis awareness and support! Group (96 members)
  67. Living with Scoliosis Group (74 members)
  68. The Truth About Scoliosis Group (73 members)
  69. Our Scoliosis Journey Group (71 members)
  70. UK Scoliosis VBT (Non-Fusion Surgery) Support Group (71 members)
  71. Treating Scoliosis in Babies, Toddlers and Teens Group (69 members)
  72. Tips for Scoliosis, Chronic Pain, Arthritis & All Other Invisible Illnesses Group (69 members)
  73. SCOLIOSIS KICK ROCKS Group (63 members)
  74. Kids With Scoliosis Group (63 members)
  75. Scoliosis Surgery: Support and Stories Group (62 members)
  76. Scoliosis Support Group (58 members)
  77. Scoliosis fundraising Group (58 members)
  78. SCOLIOSIS AND SPINAL CORD INJURIES Group (58 members)
  79. Scoliosis Group (53 members)
  80. Scoliosis- The S Squad Group (53 members)
  81. Scoliosis –Crooked But Beautiful :o) Group (36 members)
  82. The coolest people get metal rods in their back (Scoliosis surgery) Group (35 members)
  83. Teens Scoliosis Group (33 members)
  84. SCOLIOSIS SUPPORT GROUP – AUSTRALIA Group (33 members)
  85. Failed scoliosis surgery in youth. Rate of complications.  Long-term effects Group (33 members)
  86. SCOLIOSIS BRACES HARD TO SOFT BRACES Group (32 members)
  87. Scoliosis Sisters Group (31 members)
  88. Scoliosis Treatment Alternatives Group (27 members)
  89. Have Scoliosis and not had surgery (For people in the UK) Group (24 members)
  90. The history of the SpineCor brace vs. todays new Scoliosis treatments Group (22 members)
  91. Scoliosis Awareness Group (19 members)
  92. Scoliosis Warrior Athletes Group (19 members)
  93. Raising Scoliosis Awareness Group (18 members)
  94. Songs of the Spine- yoga, scoliosis and all vertebrates! Group (18 members)
  95. Scoliosis Surgery- Is it a cure for the disease? Group (18 members)
  96. Scoliosis X-Ray Facts  Every Scoliosis Patient Should Know Group (16 members)
  97. Standing Straight for Scoliosis Group (13 members)
  98. Scoliosis Support, Advice and Help <3 Group (12 members)
  99. Fitness with Scoliosis Group (12 members)
  100. Scoliosis Fusion and Flatback Syndrome Group (11 members)
  101. SCOLIOSIS  ACUPUNCTURE AND MASSAGE THERAPY Group (5 members)
  102. Essential Oils for Scoliosis Group (4 members)

Google Plus Scoliosis Support Communities

  1. Scoliosis Body Building Community (300 members, 3 posts)
  2. Scoliosis Community (154 members, 20 posts)
  3. Scoliosis Community (60 members, 2 posts)
  4. Scoliosis Community (58 members, 2 posts)
  5. Scoliosis and More Community (38 members, 10 posts)
  6. Teens with Scoliosis Community (30 members, 5 posts)
  7. Scoliosis Awareness Community (20 members, 3 posts)

Other Scoliosis Support Groups And Forums

  1. Scoliosis Support Forum (270,636 posts, 7,775 members)
  2. National Scoliosis Foundation Forums (153,990 posts, 8,912 members)
  3. Scoliosis Australia Forum (4,604 posts, 2,809 members)
  4. FixScoliosis Forum (3,489 posts, 1,589 members)
  5. Scoliosis Support Group (2,883 posts, 15,527 members)
  6. Daily Strength Scoliosis Support Group (1,014 posts, 175 members)
  7. HealthBoards Scoliosis Message Board
  8. Spine-Health Scoliosis Forum

In-Person Support Groups In The United States

Curvy Girls Support Groups (Click link to become a member, discover local meet-ups, etc.): Arizona, California, Colorado, Connecticut, District of Columbia, Florida, Georgia, Idaho, Illinois, Indiana, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, New Hampshire,  New Jersey, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Utah, Vermont, Virginia, Washington.

Curvebusters Scoliosis Support Group: Pennsylvania.