My name is Malia Jade and I am a girl who struggles with scoliosis. Make YouTube videos on my channel (Malia Jade) where I give advice on scoliosis. Wear a back brave everyday and have been for 2 years.
I got diagnosed with scoliosis when I was 11 years old. I began to be very worried after I found out I had scoliosis. My x-rays scared me, but I had heard of scoliosis before from my auntie.
My doctor informed me that if my spine reached 25 degrees, I would need to start wearing a brace. I remember pushing down on one shoulder, hoping it would correct my spine. When I went in for my follow-up x-ray, I was very nervous. That day was the day I found out that I needed a brace. I felt very sad and frightened.
Right away, I cried when I got the news. I remember thinking it wasn't true and hoping something would end up so that I wouldn't have to wear it. I'd think about how long it would take to be done with the brace, and how I would have to find new clothes to wear and what people would think of me.
The day finally came where I got my brace. After many fittings and appointments, my brace was here. I walked into the small room and saw my new brace sitting on the doctor's chair. I picked it up - it was super heavy - and put it on. It was very uncomfortable but I brushed it off like it was nothing.
The first week I wore it more and more, trying to get used to it. I'd look in the mirror and hated how I could see the brace sticking out of my top. even though my brace was really uncomfortable and struggled doing everyday tasks, I never complained about it. When I drop my pencil on the ground in class, I try to pick it up, but it digs into my hip bone. It is harder for me to do these easy tasks. Sometimes I even wish I could be like everybody else and be able to pick up something off the ground. People complain about being hot in the summer, but they do not know what it's like to have plastic on my stomach which I sweat so much under. I would rather wear a sweater on a hot day than my brace.
People ask questions all the time but I'm glad to answer them. People knock on my brace and bump into me, but I don't mind. I have learned to care less about what others think. I've gained so much confidence in these two years from wearing my brace. I do feel different, but it makes me special. Hopefully all of you wearing a back brace realize that not everybody gets to do this. It feels great to be unique.
Thanks for sharing your story, Malia! It is so inspiring to read your story and hear about your positive outlook. It is influencers like you that help to remind us that we're bent, not broken! :)
My name is Farhaana and I live in London. Here is the story that changed my life and made me who I am today. When I was 15 studying for my GCSE’s, I would get really bad back pain but I always put it down to sitting too long during exams and bad posture. There would be days where I just couldn’t get out of bed and times where I would cry in pain. I had numerous local GP appointments and A&E visits where they told me I simply had a muscle spasm and would send me away with small doses of pain killers. I soon learned to live with the pain and began attending college.
It wasn’t until my second year of college that I was scheduled to have my last appointment with my paediatrician. This appointment was for something completely unrelated and he was about to discharge me. My mum leaned in towards me and asked “Shall I asked him to check your back?” I shrugged her off and told her I was sure it’s nothing. I now thank God that in that moment in time my mum insisted and told the doctor to check my back as I had been having severe pain for a few years. He began to examine me, feeling my spine and frantically asking questions. I remember sensing panic fill the room as he asked “How long have you had this for?!” “How bad is the pain?!”
He proceeded to call two more doctors into the room and they all seemed shocked as they examined my back. At this point my mum and I had no idea what was going on but we looked on in anticipation as he told me to sit back down. He then said I needed an emergency X-ray that same day and made a call to a different department. “I have a girl here who seems to have developed scoliosis...” Scoliosis? I mouthed it to my mum. I had no idea what that word was. I still didn’t understand what was going on, neither did I know the severity of the situation or how my life would change from that day. I had the X-ray that day and then referred onto an emergency MRI all on the same day. I can remember numerous doctors, radiologists and technologists all giving me that same worrisome look, telling me this was unusual for my age.
I went home that day and researched “scoliosis”. Curvature of the spine. I remember reading something like only 3% of cases require surgery and this put me at ease thinking I would only need some physio because it can’t be that severe!
First time walking after op
A month later I was booked in with a spinal specialist at the same hospital where I saw the paediatrician. This was when I first saw my X-rays. He told me that there were two types of scoliosis: indigenous (happens as you grow or after an accident) and congenital (present at birth). The doctor diagnosed me with lumbar scoliosis but further investigation would be needed to determine the cause. He then examined me and within 30 seconds he told me that a brace would not do anything and I would need surgery. My heart sank. I was so shocked, I didn’t think my scoliosis could be that bad. I was referred further to the Royal National Orthopaedic Hospital.
A few months passed and I waited anxiously for my appointment at RNOH. The day finally came and I went with the support of my family. After more tests I was called into the surgeons office. He confirmed that I would need surgery and that my case was slightly different from what they had seen. I had congenital lumbar scoliosis due to one of my vertebrae being triangular at birth, meaning I was destined to bend as I grew. My curvature was at 48degrees and getting worse fast. He told me that if I didn’t do anything, every year my scoliosis would progress 2 degrees until it put too much pressure on my spinal cord and I wouldn’t be able to walk. If I went ahead with the surgery, there would be risk that my spinal cord could be damaged and I would be paralysed and in a wheelchair for the rest of my life. A lot for a 17-year-old to take in - I broke down in tears in front of my family and the doctor and was given 6 months to think about what I wanted to do.
The support from my family was amazing. They were there for me through all of the tears and worries and we all sat and spoke about what the best thing would be to do. I decided it would be best to go ahead with the surgery whilst I was young and I would take a gap year after my A-Levels to recover.
My college were also really good at supporting me. They set up regular sessions with the school counsellor for me and gave me a special ergonomic chair for classes and exams and also extra time for rest breaks during exams.
Once I told my surgeon that I would go ahead with surgery, I waited and waited to get my date for my operation. I completed my exams in the meantime and applied to university on deferred entry, securing a place at my first choice. Everything was in place for my surgery.
September 27th 2011. The date was set.
Spine before and after
The hardest thing about waiting for this date was seeing the rest of my friends go off to university and not really knowing how to prepare for surgery. I just didn’t know what to expect. My pre op was set for a few weeks before and I was told what the surgery would consist of and how this was going to be done. I’d been doing a lot of research in my spare time and even found a video of the surgery on YouTube (I would not recommend watching this though!) so I felt as prepared as I could.
The day finally came round and I had packed my bag ready for my hospital stay. My family stayed by my side. My brother and sister doing everything in their will to keep a smile on my face before I was going to go in. I had to take blood in case I lost some during surgery and I went in for another X-ray. I was taken to my bed which would become my home for the next week and a half. The surgeon and his assistant came round with some of the papers that detailed the surgery and it’s risks. As I had turned 18, it was up to me to sign this and give my consent for this life changing surgery. The surgeons explained again I would be having anterior spinal fusion surgery - fused from L1-L3 and bone graft would be used from my rib. One of the nurses really put me at ease and told me that the surgeon was one of the best in the world and he is really good and could do this with his eyes closed! That night I don’t think I slept though, I was really nervous.
I woke up in the morning. Changed into a gown and put my circulation socks on. I was then taken down to theatre where my mum came in with me. The anaesthetist and nurse really calmed me down and gave me anti sickness medicine and fitted me with an IV. They told me to think of something happy to calm my nerves. I held my mums hand and thought of being on the beach in Mauritius (where my parents are from) and I was put to sleep.
I was woken up by two nurses and told that I was in the waking up room. I couldn’t believe after everything I had been through and all those emotions that surgery was done. I felt like I had been asleep for two seconds. I felt very tired and my middle felt like stone, but I didn’t feel any pain. The first thing I asked was to see my family. I was taken to ICU and my family walked in. I had a chest pump fitted into my side to remove any liquid and an oxygen mask on to help me breathe.
If you’ve never been on morphine before one thing you should know is that it makes you feel like you are in a dream and you end up saying so many random things! I kept telling everyone they were my favourite and I was telling the nurses about my favourite mum, favourite dad, favourite brother and favourite sister!
The hospital took great care of me. I had amazing nurses who checked up on me, physio therapists and occupational therapists who helped me back on my feet. I spent a week and a half in hospital learning to walk again, being fitting for my back brace and revising the do’s and don’ts of recovery. I had pain from time to time and this was kept under control by medication. There was alotttt of medication for various things!
Rocking the back brace fashion in Mauritius
Coming home was difficult. Getting used to getting in the bath, getting in and out of bed properly and doing things I normally did like sitting down to watch tv with a new posture took time. The back brace I had to wear for 23 hours a day was uncomfortable at times I also had no appetite and couldn’t stomach much. I became bored at home, confined to the four walls of my room. My friends came to visit which was nice but it was hard not being able to do much on my own.
Recovery was slow and I became depressed at times when I thought about how I could have been at university. I hit rock bottom when the academic term kicked in and all my friends went back to uni and my parents had to go back to work. It was a difficult and lonely time. I had lost a stone and a half in weight. Four months passed and I got a surprise from my parents. They had booked a ticket for me to visit my family in Mauritius for two weeks to lift my spirits. Fresh fruit, a tropical island and my loving family I was so excited!
The flight was 12 hours long and I was advised to make sure that I walked frequently and drink lots of fluids. Mauritius saved me. It will forever have a special place in my heart for so many reasons. The change of scene, fresh food and love of my family really changed my mindset and my appetite was back! I felt positive and my muscles were relaxed. I wasn’t allowed to swim but I went to the beach, visited animal parks, went on short walks and spent time enjoying the calm atmosphere. The only difficult thing was wearing the hard brace in the 30 degree heat, so I switched to the soft brace I was provided with during the day and wore the hard one at night.
I came back to London two weeks later refreshed and welcomed with snow and -3 degree weather! But I was a changed person. I was positive and uplifted and was becoming more and more independent each day.
I started uni that year and by the grace of God I progressed over the three years to graduate with a First Class Honours. I went on to graduate again the following year with an outstanding teaching degree. And now I have been a qualified secondary school teacher for two years. The amount of young students who have also had spinal fusion or are suffering with scoliosis is surprising and I am so grateful that I can be a point of call and support for them!
I also became more active gradually under the supervision of my physiotherapist and began Pilates classes and the Zumba classes with my sister and gym buddy. I find that staying active really helps. I now go to the gym 4 times a week and I can jump, dance, skip and lift!
Last year after experiencing pain in my neck and shoulder, I was diagnosed again with cervical lordosis in my neck. This is now being monitored and although I feel pain after hardworking days, I am so much more positive knowing that my physio cares for me and staying active really helps. A positive mindset is key!
I also met a guy in my second year of uni. A very special one. One who understands my condition and my difficulties. One who always carries my bag, gives me massages and cares for me deeply. A true gentleman! To my surprise, he proposed to me earlier this year and we are now planning our wedding in Mauritius!
And finally, this is the picture that shows me there was light at the end of my tunnel! I believe that God will never give a person a burden bigger than one can handle and it all happens for a reason. Hardships make a person stronger and I am so grateful I found my happy ending and a new journey xx
It’s been almost 7 years since my operation and if there’s one thing I have learned it is that every cloud definitely has a silver lining! Although I am still restricted by some things (I can’t fully turn to my left and I can’t touch my toes!) I am happy to have overcome such a difficult time. It has made me strong. I have met so many amazing people online with similar stories and it’s built one big scoliosis family, which I am so proud to be a part of!
Thank you for letting me share my story, I know my scoliosis story isn’t the most severe one and there are much worse out there , but it is my story and if it can bring calm and support to even one person I will be happy!
Remember we are bent not broken xxxx
Thanks for sharing your story, Farhaana! It is so inspiring to read your story and learn about your life after surgery. You're positive attitude is a reminder that we're bent, not broken! :)
Hi! My name is Laura, I’m 22, and I’m from Mexico. I had idiopathic scoliosis, so I wore a brace for four years, which was hard. Many people made fun of me, plus bracing didn’t work, so I decided to have surgery at age 13.
In the first surgery, my right lung deflated, so I had to have a second surgery to correct it - each surgery was 5-9 hours!
When I turned 21, I had scoliosis surgery again, which took 14 hours, and still didn’t correct 100% of my curve, but it corrected it enough to calm my insecurities, and with time, I learned to accept myself for who I am.
I used to be ashamed of wearing backless dresses, but now, I love sharing my scar with the world, and I accept and love myself as I am.
Hi! My name is Amber, and last summer I was diagnosed with scoliosis. I am a dancer and athlete, so it was hard for me to hear. I was taken to my local gp, however, she was absolutely useless and couldn't do anything about it. This left me waiting for five months to get an appointment and x-rays and when I did, my thoracic curve was already at 43°, meaning that I would have to go through a major surgery to correct it...this was big news for me, as I had always thought I had mild scoliosis.
I had an MRI scan, more appointments, and I was referred to Edinburgh where I met my amazing surgeon, Mr. Tsirikos. He was lovely! He told me I would get surgery on May 8th, 2018. I was upset as I had to miss a rock challenge that I had worked hard on :(. Coming up for surgery, my head wasn’t in the right place, so I decided to set up an instagram account to help others going through the same thing, which really helped.
Before surgery, my curve was over 50° and I was in a lot of pain. Three months post-op, I have no regrets and can’t wait to get back dancing again! I remember feeling alone and scared when I was diagnosed - like the whole world was falling apart - but I learned that if you push through, the storm does clear. Stay strong and keep fighting!!! xx
Thanks for sharing your story, Amber! Reading about how hard your diagnosis was for you, but your ability to channel that energy into helping out our community and your recovery is a reminder that we’re bent, not broken! :)
I was diagnosed with scoliosis at 9 years old by a pediatrician. My family and I then went to an orthopedic doctor and after a couple of months of my curve increasing, we decided to brace. I wore the Providence brace for 2 years, only at night. After that, I didn't have to wear the brace and my curve was stable at 30 degrees. I tried going to a chiropractor for 2 years, which unfortunately, didn't help. I then went to another doctor and was told that the curve had increased to 48 degrees. 4 months later, we went back to see if the curve increased and it had again increased to 52 degrees. We then made the decision to have surgery in the summer of 2017.
I had the surgery July 11th, 2017. I had 2 Cobalt-Chrome rods and 19 Titanium screws inserted in my spine from T4-L3. I was in pediatric intensive care unit for 2 days and I sat up in the chair the day after surgery! After that, I was moved to the general pediatric floor for 3 days. I was walking and doing stairs on post op days 3 and 4! I stayed in the hospital for 5 days. Everyday got better after about 2 weeks! I was doing some things by a month! I walked everyday and watched a lot of tv shows! I had several friends visit! 2 of my friends Izzy and Julia had the same surgery, so they gave me a ton of tips and helped answer any questions I had.
I have always been a runner: I’ve done cross country, track, ran a half marathon before surgery, and several other races. I was able to do spring track since I was 8 months post op, which was the best track season ever! I then did a half marathon with a friend at 11 months post op and was able to get a personal best of 1:59:12! I love to run and thought it was going to take a while to be able to run again, but I’ve been more thankful than ever now that I am able to run after having this major surgery.
I turned 1 year post op on July 11th, and time has gone by so fast - things were so different a year ago. I was just recovering from surgery last July. It may of have been a long recovery, but I learned so much from this big adventure and experience! It changed my life, taught me many lessons and helped me become stronger!
Thanks for sharing your story, Colette! It is so inspiring to hear about your successes after surgery, and hearing about your experience is a reminder that we’re bent, not broken! :)
"You never know how strong you are until being strong is your only choice" -Bob Marley
Hey! I am Raneem, I’m 16, and I have scoliosis. I was first diagnosed when I was 12...everything changed drastically. One day I was completely fine and the next, I was facing the fact that I had an almost 50 degree curve in my spine. It was all so unexpected. Seeing my x-ray for the first time was a massive shock for me! I was supposed to have surgery due to the severity of the curve, but I didn’t, considering my young age and the flexibility of my spine.
I was then fitted in a Boston brace. I wore the brace 23 hours a day. At first it was devastating and extremely painful: not just the physical part, but also the emotional pain that came with it. When I first wore it at school, people started looking at me differently. I didn’t get bullied, but I slowly became left out - people thought it was a disability. I felt very self-conscious! I told myself it wouldn’t last, but instead I was either seen as abnormal or was drowned in pity. It was as if people didn’t see me anymore. They only saw my scoliosis. I hated it. I had also started physical therapy 3-4 times a week, and everything became way too stressful. So, after 3 years of bracing, I decided to change my school. I hid the fact I had scoliosis. Ironically it felt amazing to just be seen as normal!
Now, after 4 years of bracing, I finally only have to wear it at night. I recently went to get a new x-ray and I have an almost 45 degree lumbar curve, and I am most probably going to have surgery. I was really scared at first, but now I’m actually waiting for it, since it’s my best option. I have struggled a lot with scoliosis, but one thing that always helps is to remember everything will pass...it’s only a matter of time!
Thanks for sharing your story, Raneem! I know that scoliosis can be really hard at times, but during those times, remember, we’re bent, not broken! :)
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To share your story, contact me through the contact page. All stories are encouraged...whether you are a scoliosis patient yourself or know someone with scoliosis, your story would be much appreciated!
Hi, I'm Kate.
A 16 year old SoCal-raised student, swimmer, and scoliosis patient with a love for Netflix, Pinterest, and Harry Potter.