More Scoliosis Stories

Meet Running with Scoliosis:

Perth 4

I set up the website in July of this year as a way of telling my scoliosis story and to create a place for others to share their stories.

I had also decided that I wanted to start running 10k’s to fundraise for Scoliosis Association UK and to raise awareness of scoliosis.
I was diagnosed with scoliosis when I was about 14 years old and was told that I might not be able to lead an active life much into my late 20’s due to the severity of my curves; I have two curves in my spine making it S-shaped.
To correct the curves, I had my spine fused and two metal rods inserted either side of my spine.
I’m now 31, run as much as I can and play football (soccer) twice a week; I’m as active as I’ve ever been.  Because of this, I decided to start running in 10k’s to fundraise as I know that I’m one of the lucky ones as many others with scoliosis are not able to lead as active a life as me.
In a nutshell, Running With Scoliosis is my place to share my scoliosis story, a place for others to share theirs, and it’s what I do – I run, with scoliosis.
Here’s a link to  My Story if you need any more info.

 

Rhythm of Life, emailed me her personal scoliosis story this weekend and was excited to be featured on The Curvy Spine. Her story is very similar to my own story, and I hope you  enjoy it as much as I did.

1. How old were you when you were diagnosed with scoliosis?

 I was diagnosed with scoliosis at the age of 10.

2.   Did you have any treatment before surgery or was it just surgery?
My parents and I tried every other treatment available before going for surgery. The Orthopaedic doctor suggested that I should go for surgery during my first visit itself.

Before going under the knife I was put on a full body brace for a year and a half. I suffered a lot during this time at school. I was looked upon like an alien. It was exhausting to explain to each and everyone (students and teachers alike) what it was for.

After seeing no improvement, next we went for Ayurvedic treatment which included drinking the most horrible concoctions ever. This didn’t help either. Another treatment was back massage using barefoot. This went on everyday for about 10 months. I had to take a break from school at this time. The curve was getting worse by this time. So finally we ended up going to an Orthopaedic hospital. One look and the doctor told me to prepare for surgery as soon as possible. There were other issues like low Hemoglobin and reduced lung capacity which needed to be improved beforehand. After 2 months of preparation, at the age of 14, I went for it.

3. What 3 recommendations do you have for anyone about to go into surgery?

At the time I didn’t have access to the internet. Researching about it now, I see that there have been lots of development now in this field. The ignorant me thought I would somehow start walking straight magically after the surgery. This did not happen. I still have a curve though not as bad as before. (I cannot think of any recommendations in fact.)

4. Any other words of wisdom you may have.

Scoliosis is not the end of life. It’s true that our activities would be restricted. But with the support of family and friends we too could lead a normal life. I walk, go on long road trips, hike, do yoga. Be brave, face the challenges and take things as they come.


Meet Erika Maude

The Scoliosis SOS clinic was founded by Erika Maude, who was diagnosed with scoliosis when she was in her early teens. From the ages of 13-15, Erika wore a Boston brace in an attempt to correct her symptoms, but was left considering drastic spinal surgery after her condition progressed. In favour of undergoing a complex medical procedure, Erika decided to research non-surgical methods of treatment and management.

From these findings, she not only managed to treat her own condition, but also devised a unique treatment programme, which is now used to treat patients at the Scoliosis SOS clinic in London. As well as providing a successful alternative to spinal fusion surgery, which can be managed by the patients themselves, Erika has also gone on to be a trusted authority and speaker on the subject. Since the clinic was first established in 2006, thousands of patients have successfully learnt to manage their condition with the ScolioGold treatment programme, going on to experience a progressive reduction in pain and improvement of their self-esteem.

For a closer look at the work conducted by Scoliosis SOS, you can visit their Video Experiences page, which details the treatment of patients they have helped over the years: http://www.scoliosissos.com/reviews/patient-stories

If you would be interested in featuring a piece about Erika’s experience, and how she turned her own struggle with scoliosis into a successful treatment programme for others, please feel free to get in touch using the email provided. I will then liaise with Erika, in order to put together a compelling and informative piece for your readers.


unnamed.jpgMy name is Melina Khan and I am a high school student. I was diagnosed with scoliosis when I was 12 years old and wore a brace for two years. In July 2017, I will be undergoing spinal fusion surgery. My story is as follows –

At age 12, I was anything but happy. I lived with this thing that I didn’t really understand. I had heard my doctor call it ‘scoliosis’, but I didn’t truly understand what it was. That was until I found myself sitting in a chair in the ‘orthopedics’ wing of a children’s hospital, my fingers numb with nervousness and anticipation. I left the hospital later that day confused. Why was I getting a back brace?

Fast forward four months, my first day of seventh grade. It was the first time I would ever be wearing my brace to school, let alone at a new school surrounded by many new faces. I dreadfully pulled a dull t-shirt over my head, and black leggings up to my waistline that was covered by hard plastic. I wore sneakers, with my hair up in a messy bun. I went to school that day with not an ounce of confidence in my body. The other girls were wearing dresses, their hair done using tools I hadn’t picked up in months. I felt like I wasn’t entitled to dress up and feel beautiful because I had to wear a back brace.

Over the course of my seventh grade year, I lost the little confidence I had left.

In the middle of that year, I started wearing makeup. For any young girl, starting to wear makeup is a pivotal moment in the road to becoming a teenager. My purpose was different; I wanted to be what all of my friends were: pretty. I caked on foundation that wasn’t my shade, filled in my bushy eyebrows that hadn’t been waxed in weeks, and my attempt at putting on mascara was, to say the least, a miserable failure. I was wearing an excessive amount of makeup and I truly looked anything but pretty.

My friends had no idea that in between each day they saw me at school, I was spending my days crying and losing sleep over my self-image. I absolutely hated who I was because I couldn’t dress up and feel pretty like the other girls, and it was on my mind all the time.

When I was in eighth grade, my doctor ultimately told me that even though I wore the brace diligently, it wasn’t doing what it was supposed to. He told me that I would stop wearing my brace and in six months, we would decide what the next step was going to be.

Six months came and went, and I found myself in his office once again. At that point, I had spent hours on end contemplating what the best choice would be. I was young and terrified of surgery, and for a long time, was in denial of the obvious right choice. I eventually came to terms with the fact that surgery was the best choice for me, as I was and am young and have the time to recover.

My surgery is scheduled for July 9th, 2017. So, this summer, while my friends are going on tropical vacations and getting tan, I will be bed ridden for most days. Even though I was not okay with the idea of losing my summer to fight my scoliosis, I realized one important thing- if not now, then later. If I do not deal with my curvy spine now, I will later. And now is a lot better than later.

Want to connect? Contact me here.


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