Your Scoliosis Stories...

Your Scoliosis Stories: Lorraine’s Story

Firstly, I just want to say a huge thank you to those who have submitted their Scoliosis Stories to my blog. It means a lot to me and I think these stories really help and inspire others who suffer with scoliosis. The latest scoliosis story comes from Lorraine, who shares her experiences with scoliosis and having scoliosis surgery in the 1970’s.


Your Scoliosis Stories: Lorraine’s Story

1970’s Surgery

I was diagnosed with idiopathic scoliosis when I was 13.

I was 14 when I had my surgery and that was in 1970…a very long time ago!

Back in the day this involved a month on a Stryker frame type of bed where I was pinned down at night so I wouldn’t roll over in my sleep.

After the first month I spent 5 months in a body cast not allowed to sit or stand at all. I pretty much had to learn to walk again after that cause my muscles were so weak.

The next 6 months I wore a brace shaped like the body cast during the day. At the end of it all I was straighter by 3 inches but still had a fairly prominent rib hump. 

Happily I went on to have a good life, had kids with no troubles and although I am not athletic I could walk and do exercise classes at the gym.

My biggest problem with scoliosis has been poor body self image and that continues to this day. I try to not let it bother me but still always wear baggy clothes to try and hide the rib hump.

I don’t like anyone to touch my back which limits hugs 🙁 I try to get over it but even after all of these years it is an issue for me.

In 2009 I had to have one of  rods removed as it was coming thru my skin. I asked the Dr to give it to me after it was removed and it is as shiny as the day they put it in …that titanium is strong!! I am grateful that they were able to correct my curve and prevent it from getting worse.

Although scoliosis can be hard to live with it has made me who I am….Scoliosis Strong!


Thank you Lorraine for taking the time to share your scoliosis story. It sounds like you went through a lot but it’s great that you were able to go onto have a good life post surgery.

I think all of us with scoliosis can identify with your body confidence issues. I really think this is one of the most overlooked symptoms of scoliosis but it’s one not to be ignored – I’ve written a few posts on this issue (5 things I do because of my scoliosis; body image) and I really can sympathise with you.

If you’d like to have your own scoliosis story featured on this blog, simply follow this link and share your story!

 

Louise X

Your Scoliosis Stories... Mark's Story

Your Scoliosis Stories: Mark’s Story

The next scoliosis story comes from Mark, who offers a different perspective. Mark is 62 and had his first scoliosis surgery 30 years ago.


Your Scoliosis Stories: Mark’s Story

30 Years Ago

As a young boy I had a lot of medical problems.  Among them I remember having asthma, anaemia, and a heart murmur.  So at the age of 12, our family doctor suggested a complete physical be done at the University Hospital in Madison.  After a whole day of tests, it was discovered I had idiopathic scoliosis.

From that day on, every doctor had the same prognosis and they didn’t bother to sugar coat it.  I was told I would not be able to do anything physical after my early twenties, so I should study hard and get a job pushing a pencil.   Back then I loved sports and hated school.  Why not just stick a knife in my heart?

Most people will probably stress a little about the anticipated difficulties of growing up, but for someone with scoliosis, it becomes an even scarier endeavour.  I wondered how I would ever manage as a husband, father, homeowner, and provider, when having to struggle with pain and fatigue every day.

For ten years I gave it a good fight by staying as healthy as possible, but at age 32, I couldn’t cope anymore and surrendered to surgery.  They tried to prepare me for what was considered at that time a very complex, risky surgery.

I was told I might come off the table paralysed, and maybe even not live through it.  The surgeon would straighten my spine using foot long rods attached to my vertebrae with hooks, screws, and nuts.  He would then fuse 9 of the vertebrae together into one solid block.

Regaining consciousness after the surgery was even worse than anything I had imagined.  One particular night in the hospital, I was in very rough shape.  It was so bad I was convinced if I were to fall asleep I would not wake up.  It sounds melodramatic now, but back then it had real life merit.

I spent two weeks lying flat on my back, except for the few times they log rolled me onto my side.  When they did that, I usually lost my breath due to pain and the nurse would have to coax me back to breathing again.

Before they sent me home to recover, they put me in a huge, plaster, body cast.  It extended from just under my chin to down over my hips.  There are other stories about my life in that cast, but I am going to fast-forward six months to when they took it off.  This was an extremely tough time, and I really wanted to put it behind me.  No such luck!

The doctor informed me it didn’t work as planned and I would have to go through it again.  I didn’t know it then, but the second surgery was not as painful and it provided an opportunity to remove all the hardware.

About twelve years later, thanks to the internet, I found a very skilled back surgeon practising in New Orleans.  He would do a third surgery to put some finishing touches on my back by removing sections of five ribs.  When my spine was straightened, those ribs had been pushed outward which made sitting in chairs difficult.  The sectioned ribs would then grow back correctly so I could sit with less discomfort.

It has been 30 years since that first back surgery.

It is generally assumed by family and friends that they fixed me, but that’s not how it is.  What they did was keep me from being disabled.  I was informed from the beginning that I would continue to have problems because now the vertebrae that are not fused have additional stress to compensate for those that are fused.  So the pain and fatigue remains, although slightly more manageable.

Scoliosis has made my life a lot harder than it needed to be. The last thing I want to mention is my continued ability to play singles tennis at a fairly high level.  It is my only safe haven in an otherwise crappy hand God has dealt me.

I’ve often jokingly told people my summers consist of just two things: playing tennis, and recuperating from playing tennis.  People wonder how that’s possible with my bad back, they don’t realise the varied movements and range of motion while playing is physical therapy for me.  However, I have to keep myself in good enough condition to handle the demands of the sport.  I know there will be life after tennis, but it can wait.


Thank you Mark for taking the time to share your scoliosis story in such detail. I’m glad that you are still able to play tennis and that this helps you to manage your pain.

It’s interesting to hear stories from those who have had the surgery a long time ago.

As an aside, it’s important to note that scoliosis surgery (and the hardware used) has evolved in 30 years. Nowadays most people are up walking around a few days after surgery and body casts are not required. The instrumentation generally used now is much stronger (titanium) and complications with the hardware/fusion are rarer than they were 30 years ago. This is an example of how far treatment for scoliosis has come in 30 years.

If you’d like to have your own scoliosis story featured on my blog, please follow this link and share your story!

Louise X

Your Scoliosis Stories...

Your Scoliosis Stories: Sadie’s Story

Well, today is the last day of June (can you believe it?) which means the last day of Scoliosis Awareness Month.

To finish off the month, I thought I’d post a couple more of your scoliosis stories that I have received. Please keep them coming and I’ll be sure to feature them on my blog. 🙂

Today’s scoliosis story comes from Sadie, you can read her experiences with scoliosis below…


Your Scoliosis Stories: Sadie’s Story

I just wanted to say thank you.

When was first diagnosed with scoliosis I had no idea what it was, and I found myself searching for answers, until I stumbled across your blog. I found your blog so useful and even now 1 year on I still read your blog.

I was diagnosed with scoliosis when I was 12 years old, I didn’t know what it was and I was afraid.

I spent a year going back and forth to appointments trying to figure out what the best course of action would be.

I had an S shaped curve, 70 degrees thoracic and 57 degrees lumbar.

I was told that my scoliosis was too severe for bracing, and that the only correction I could have was surgery.

The whole thought of surgery terrified me, I had no idea what to expect. However, I knew I needed the surgery, and so my parents and I signed the agreement papers, and that was that !

The surgery and recovery was hard, but I am so glad that I did it. I couldn’t be happier with the results, and I can safely say 1 year later that it was all worth it in the end !

Thank you for taking the time to read my story.

Sadie Rawson xx

You can find out more about Sadie and her experiences with scoliosis on her blog Looking Back – be sure to check her out!


If you’d like to have your own scoliosis story featured on my blog, please follow this link and share your story!

Your Scoliosis Stories...

Your Scoliosis Stories: Kacey’s Story

As June is scoliosis awareness month, I thought I’d kick off a feature I’ve been meaning to do for a while: Your Scoliosis Stories!

This is a feature where I invite you, my readers, to share your own scoliosis stories so that we can all help and inspire each other.

Below is the first story in this series, featuring Kacey and her very recent brave experiences with scoliosis surgery.

Kacey is only 3 months post op but it sounds like she is already doing amazingly well!


Your Scoliosis Stories: Kacey’s story

 

I found out I had scoliosis when I was 13 years old.

I’ve sat through numerous x-rays, struggled through many physical therapy classes, and of course dealt with having terrible self confidence.

5 years later, I finally had scoliosis correction surgery.

Only 3 weeks post-op, I have never felt better about myself.

When I started going to the doctor at only 13 years old, my curve was around 30 degrees. I was almost done growing so it wasn’t something that a brace could fix. At that point I was told that it should stop progressing and that it will be something that I was just going to have to live with.

Little did I know that throughout these last 5 years that it had progressed by 15 degrees.

Going into surgery on May 9th 2017 with a 45 degree curve…I was TERRIFIED.

To my surprise, it wasn’t as bad as I thought it was going to be.

It was definitely scary but the 5 days I spent in the hospital flew by and I was home before I knew it. After that, everyday got so much easier.

I grew 2 inches and I have the best battle scar from my scoliosis journey!

Scoliosis Scar - Kacey
Scoliosis Scar – Kacey

Thank you Kacey for sharing your brave and inspiring scoliosis story. What an amazing scar and tattoo also 🙂

I’m hoping to make this a regular thing and would love to feature more of your stories on my blog.

If you would like to feature your own scoliosis story, simply follow this link: Share your story. I’d be so grateful!

Thanks for reading,

Louise X