P.O.V

I feel like welcoming myself back right now, let alone anybody who reads this! I haven’t posted since 29th August and I have no idea why. So much has been going on in my life with regards to my back/shoulder blade and treatment. I guess I’ve been so bogged down with my university work that I haven’t had much ‘me’ time, and self-reflection is so important, and I need to stop neglecting this. Anyway…

Things were going well, I saw my consultant on 5th September, my spec CT scan was clear, and I was told that all my metal work is where it should be, is looking good, and I was praised heavily for the incredible recovery I have made. However, my shoulder blade has worsened a lot, and ¬£900 worth of private physio has made no difference, in fact this winging scapula problem has now appeared on my other shoulder blade. I had nerve conduction studies and EMG probably about 6 weeks ago now, a very unpleasant experience, but absolutely convinced that on 27th Feb 2018, I’d get the answers I’ve been waiting for for 11 months now.

Long story short – everything has been getting worse, and affecting me so much, just in pain constantly, and I found nothing to date that has helped alleviate any of this whatsoever.

Today, as if all my angels were watching down on me together I got a cancellation and saw my consultant at 10:55. The nicest guy I know, he unfortunately couldn’t give me anything I wanted today and told me everything I didn’t want to hear – EMG and nerve conduction studies inconclusive, referral to a shoulder specialist necessary.

So here I am, 11 months from my original referral, no progress made, worsening pain. Feeling down, but making sure I reiterate to myself that this earlier appointment means I’m already approx. 10 weeks ahead of the game from if I got my results in Feb.

I found a quote earlier and it reads:

‘Impatience is the root of all your problems, you cannot force life to give you answers, you must let them unfold before you’.

And I think this pretty sums up my point of view today. I’ll come to terms with today and take away the positives that the ball is rolling, many things can now be ruled out, and that I am still looking forward.

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– 5th September

Hey guys,

not long ago I received a text from the ROH reminding me of my appointment next Tuesday morning. Although slightly anxious I’m feeling very positive as my intensive physio sessions and rigorous daily routines of exercises and stretches seem to finally be paying off. I am feeling much, much better!

I’m currently experiencing very little lower back pain which is the most amazing thing ever as I honestly couldn’t remember what it felt like to be pain-free, and my shoulder blade although a work in progress, is feeling stronger and tighter. I’m still experiencing some pain, but over a much smaller region of my scapula and also a lower intensity, and so I am very happy.

It’s taken me approximately 7 months of weekly physio sessions, and daily exercises taking over half an hour per time to really notice a difference. But everything is looking up, and my mentality that has harrowed me for so long that ‘the pain I experience now, I must be stuck with’, is rapidly diminishing. It really is hard work but a pain free, limitless existence is absolutely achievable, so please don’t give in.

I’m currently 5 days in to a family holiday in Corfu, relaxing and thinking through lots of exciting things that I have coming up for the remainder of the year, and one of those things is a visit to the Royal Orthopaedic Hospital next week; I cannot wait to tell my consultant orthopaedic surgeon that I am doing a hell of a lot better.

 

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Feeling reflective…

So it’s a late night and since unwinding from a long day at work my thoughts once more turn to ‘the journey’ this far, and to where I am present day.

Since surgery in 2010 I had no problems, restrictions etc whatsoever with my spine, scar, movement or anything else, not until 2016. I’m a big gym-goer, ex football player and so the gym is my temple. After a fairly gradual increase in load and intensity I noticed a quickly worsening, sharp and very painful weakness in my lower back, which I can only describe as the feeling that my back would give way without notice when lifting weights, mainly squats, and especially deadlifts! I saw physio recommended to me by my GP, after a 4 week programme I thought my problems were solved, only for the same trouble to return in even less time than the duration of physio. More physio – same scenario – problem solved, then reoccured.

Then I was introduced by a good friend and fellow gym buddy to a private physio, and long story short he was amazing, after little more than 1 month of physio and PT, I felt powerful, domineering and ready to resume life as normal with no limitations once more.

January 2017 and I developed a nasty back pain again in my lumbar region, I returned to my physio a few weeks ago, (after enduring the pain and hopelessly praying it would cease for the past 6 months), and this leads me to my reflective mood.

Upon embarking on surgery, you really are bombarded with the T&C’s of surgery, risk of paralysis, infection, and worse. But personally, I recall very little if any mention of quality of life post operatively. I’m an active reader and participant in many Scoliosis groups particularly on Facebook and I tire of the posts from so many people who are bewildered by their pains as a result of everything that has happened. There are so many chronic pain suffers that I find it frightening. So many that are waved goodbye by consultants and discharged by the clear x-ray results, and positive physiotherapy reports. But complaints of constant pain dismissed too easily as you’re told that pain is expected after such major surgery and upheaval of your biomechanics. My heart goes out individually to everybody who can relate to this because I’m with you and am at my wits end, but we must remain positive.

Sometimes I honestly question whether surgery was my only option when 7 years on I feel my story really is 1 step forward and 2 giant leaps back.

Yet give up I will not, 3 weeks into treatment with my trusted physio and after having being told that my quadratus lumborum is the cause of my problems…

stretch and strengthen I will,

worry and give in I will not.

First blog post!

Hi! I’m Chloe

I’m 19 years old, and I’m from England, United Kingdom.
In April 2009 I was diagnosed with Scoliosis; in March 2010 I received corrective surgery to mend my crooked spine.
11 years old and standing roughly at 152cm, surgery gave me an immediate surge once my spine was straightened, standing an approximate 4 inches taller. And I sure knew about it – one of the first memories I have after recovering from anaesthetic was of feeling very lanky, with unusually long legs!

 

Prior to surgery my curve was measured at 65 degrees, and surgery resulted in a spinal fusion spanning T1 – T12.
My Scoliosis was termed idiopathic, meaning that there was no exact known cause, and unfortunately this is still by far the most common type. As many x-rays showed my curvature was rapidly developing, surgeons of the Royal Orthopaedic Hospital in Birmingham advised that surgery would be necessary to prevent further deformity and rid me of the horrendous and excruciating pain I was experiencing every minute of every day. Aged just 11 years old this news came as a devastating shock, especially after having been examined my GP and told that I had a ‘slight curve’ that would hault itself once I stopped growing, and cause no disruption to my life. I felt overwhelmed and thought my life was over. I didn’t know who to turn to and didn’t feel comfortable speaking to my parents or family; I felt as if this burden they were carrying was MY FAULT.

 

The months preceding surgery were hugely difficult for me both physically and mentally, and the months following surgery were even more challenging.
7 years, almost 8 years post op, and I’d be lying if I said things were perfect. Likewise I’d also be lying if I said I regret any decisions I made. Scoliosis surgery is life changing, regardless of what anybody says, you arrive at hospital, and wake up 10 hours later as a completely new version of yourself. Spinal fusion has left me with a posture that makes me feel as though I’m strapped to a wooden board… but I have faultless posture. My 14 inch scar makes me feel anxious when exposed… yet the incredible story behind it makes me feel like I could face anything in the world.

 

And it is the 14 inch scar that I see every day and night in the mirror when I change for work, university, the gym, that has compelled me to start this blog and reach out to as many people as humanely possible from the UK and across the world. I hope that my family and friends can re-experience my journey, and that new friends from all over the land can join me on my new adventures 7 years, 5 months post surgery.

 

I hope that I can help you in some way, any way.
I hope this blog can make a difference.