I was diagnosed with idiopathic adolescent Scoliosis at around ten years old after suffering from back ache for several months. I saw my GP who gave me a simple examination that involved bending over to the side, to the front and just standing there quickly spotted the problem and I was referred to a specialist for monitoring.
The word deformed was used regularly and it’s negative connotation hurt me greatly. I remember going shopping with my family at around 12 yrs old and there was a health exhibition there. My parents were browsing a stand for a new sports clinic that was opening near where we lived and a man stared at me and said ‘ I can see she’s deformed with scoliosis from here, we might be able to help with that’. It felt like a knife in my heart. It sounds stupid but it’s hard enough being a tween and a teenager as it is without those types of words being thrown around.
When I hit my teens I began to feeling very uncomfortable going for these appointments as I always had to take my top off for examinations and I felt embarrassed so I started banning my parents from coming in with me.
This is where things started to get a bit messed up. I remember going to the hospital with my dad to have a horrible, long, scary MRI at about 12 years of age.
As usual I refused to let him come in with me and that’s where it stopped for many years. I think I told my parents things were all fine and I didn’t need to see that doctor again.
It was only when I ordered a copy of my medical records a few years ago I discovered that the specialist had written to my GP recommending I had spinal surgery after the MRI I had but that was never passed on to my parents. I spent a lot of time during my teens on my bedroom floor because my back hurt too much to sleep in my bed. My mum would open my door to wake me in the mornings and find me camped out at the side of my bed.
How Scoliosis affected my body
It’s hard to describe and I don’t know all the official medical terms so I hope this makes some kind of sense. In my case my pelvis is twisted slightly and before the surgery my right hip was sort of indented and my left hip stuck out a lot so I looked like I had one really big hip and nothing on the other side. My shoulders sloped significantly toward the left side. The curvature was worst to the left side of my body and my ribcage is offset from the normal position so I have a large protruding boney lump called a ‘Rib hump’ which sits under my left breast, it’s not under the middle of my breast but slightly to the left.
I had a bit of a reduced lung capacity that I needed physio therapy for after the surgery and I get breathless now due to pain and tiredness.
It can even affects the clothes you wear. I struggled to get trousers with buttons/zips that fitted properly due to my hip shape and back fastening bras and under wired bras have always been very painful because they rub and put pressure on the rib hump. I was able to wear jeans and button up trousers after surgery but bras are still an issue so I’m thankful that sports bras have become hugely popular now as they are the only bras I find comfortable!
Car accident no.1
When I was 19 I was involved in a rear end traffic accident which left me with whiplash and lower lumbar soft tissue damage which didn’t heal. The legal case was very drawn out and still ongoing two years later when I was 21 and pregnant with my first child. I saw a specialist on Harley street as part of the case.
He told me “your Scoliosis is progressing fast, if you don’t have surgery by the time your child is 10 yrs old they will be pushing you around in a wheelchair due to the extent of the curvature”
In most cases of adolescent Scoliosis the curve stops after the growth spurt. Mine hasn’t stopped and was at around 76 degrees out on one side.
Car accident no.2
Eventually I got my surgery date. But nothing goes smoothly for me. 5 weeks before my surgery I was returning from Xmas shopping with my son and my parents and we were involved in a rear end car accident which left me with whiplash and lower lumbar soft tissue damage. Again!
Luckily everyone else was fine but the doctor at A&E heard about how close my surgery date was and informed me that the whiplash from last time had never healed so this one just added to that injury. The soft tissue damage meant the recovery from my operation would be more painful and harder and he suggested changing the date of my surgery. I just wanted to get the surgery done and over with so I could move forward with my life.
When the day before my Surgery came around my partner stayed at home with our little boy and my parents took me to the hospital. I was as cool as a cucumber until my parents went to leave and told me they’d come back the next day in time for when I returned from surgery.
I burst out crying and pulled my mum by the arm into the hospital bed so I could cling to her. I begged them to come back before surgery to hold my hand. I was petrified. Despite being a mum myself I have never felt so scared or alone in my entire life.
I was first on the surgery list so it meant my parents would have to travel the 55 miles journey at the crack of dawn to be with me at 7.30am for the pre surgical stuff. It was a huge ask, perhaps unreasonable but I felt like a little girl again and I just wanted them by my side.
As usual they didn’t let me down, my mum held my hand right until they wheeled me into the operating room, she was the face I saw as the general anaesthetic knocked me out. They waited all day and rushed to my bedside in intensive care. They visited everyday, between them both working full-time and helping to look after my son when my partner had to work. My partner would try to cheer me up and help give me bed baths.
My younger brother fed me when I wasn’t strong enough to feed myself. He looked after my son aswell . Everyone put their lives on hold for me.
Anterior spinal fusion surgery
I had an anterior spinal fusion which involved removing damaged discs, replacing them with bits of rib and placing titanium rods and screws in my spine which would help to maintain a straighter positioned spine. I spent a day in intensive care after surgery then 8/9 days on a ward. It should have been 12/14 days but being my typical pain in the ass I got out early!
Recovery and family
My whole entire family were amazing and visited me despite being 55 miles away from home and my partner and my parents were trying to work full-time and look after my toddler being complete superstars.
But my toddler cane to see me the day after surgery and I scared him lying in the bed, flat on my back, with tubes and wires coming out of me so it was decided that it was best he didn’t visit again until I was a bit better. I missed him so much and felt very lonely without him. I had trouble sleeping at night so I watched Sex and the City box sets on a portable DVD and the nurses would keep me company when they had a break which helped me but I just felt scared and alone.
I desperately wanted my drips and drains out so I could then start getting back on my feet and try walking but the doctors refused. Eventually I told the ward sister I had a toddler I needed to get home to and if the doctor didn’t remove the drains etc then I would. Strangely that worked. Sitting up was the hardest thing and my head was spinning as I’d been laid flat for days. The physio helped me into a huge chair and after a few minutes I felt exhausted and I hurt everywhere. One of the drips I forced them to remove was the morphine pump so I didn’t have that at the push of a button anymore. The next day I stood up and it felt like I’d climbed a mountain but I desperately wanted to have my first shower post surgery so I willed myself a few steps before being put into a wheelchair to the shower.
My mum brought my son into see me and I hadn’t seen him in over a week and I heard the bell of his Noddy toy before I could even see them.
He jumped on my bed and gave me the biggest hug then said ‘mummy time to come home now’ and that was all I needed to hear. I knew there were certain activities I had to pass before I was allowed to go home so I asked the ward sister if she could get the physio here. I pushed myself so hard to pass them thinking of my little boy’s words. The doctors wanted to keep me in hospital a few more days but I told them I was going home whether they discharged me or I discharged myself. I was so frightened the long car ride home, every noise made me panic and I felt very vulnerable to the outside world. But going home was the best feeling.
Life after surgery
It wasn’t an easy experience and the operation and recovery was the harder, most painful, scary thing I’ve had to go through but I would say that it’s made me a stronger willed person because of that difficulty. It definitely left a few scars both physically and mentally but it taught me how strong I can be.
In fact I had a tattoo on my back to remember what I’ve been through and it reminds me that I can get through more than I think I can.
I’ve suffered from chronic pain for many years now and to me it’s abit like breathing. It’s always there and something you feel. There’s not much you can do about it and it could be worse. Other people suffer from far worse things than me. So I try to focus on things that make you smile and live your life. It may not be easy or perfect and some days are definitely worse than others but it’s the only life you get. You have to make the most of it. Never give up!