June is National Scoliosis Awareness Month. Scoliosis is a skeletal deformity disease which affects only 2% of the entire world’s population, mostly girls during puberty.
Her.ie spoke with Niamh O’Donoghue, a 20-year-old student who has already undergone three major surgeries following diagnosis of her condition. Here, Niamh tells us her story from being a tomboy playing football, to living through paralysis and keeping a positive attitude…
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“I have idiopathic scoliosis which means it’s unknown. The doctors put a fancier way of saying it by putting the name in front. They reckon that my body took a growth spurt and my spine grew but it had nowhere to go in my body. It couldn’t go up, and it couldn’t go down so it had to go around, and that’s how the curve formed. There were no symptoms at all.
I was out playing football one Friday night, (I was a regular tomboy growing up), and noticed something when I woke up the next day when I went in to take a shower. I was a tiny 13-year-old, really scrawny, and I stood there looking in the mirror picking out all my lumps and bumps, the way any 13-year-old would do. I noticed that my left hip was jutting up and my right shoulder was going down, and I had a predominant hump on my back.
I felt nothing, but I knew straight away ‘this isn’t right’. My body wasn’t right at all. So I called my mum and she placed me on her bed and traced her finger down my back and it was completely over the other side of my body. She didn’t want to panic me, obviously, but you know when you have an instinct. When you know someone’s not telling you something, that there’s something really wrong. My mam was a school nurse and she knew.
It being a Saturday I couldn’t go to the doctors, I couldn’t go to the hospital and had to wait until Monday. We went to my local GP and he sent me straight to Temple Street. I met my specialist for the first time. I was 13, so I hadn’t got a clue what was going on.
He was in absolute shock. He’d never seen such a severe case so he called in all of the surgeons from the Royal College of Surgeons to literally prod me and poke me. I didn’t mind at the time, but looking back, I was like a circus freak.
After that they started looking at courses of treatment, but my curve was reaching over 70 degrees. Everyone has a natural curve of 20 degrees in their spine, that’s what gives you your flexibility, but mine was so severe I was literally walking lopsided.
Normally what they do is give you a brace if your spine is under 60 degrees, so that wasn’t even an option for me. And it’s not as if it’s a comfortable brace, it’s a plaster of paris brace, so I was lucky enough not to have to wear that first. The only course of action I could take was surgery.
This all happened in the September, and I was scheduled to have my first surgery in the February of 2007. Thankfully everything went as normal. Before my first surgery my parents brought me to Disneyland, which I was really fortunate about, and it was their way of trying to take my mind off everything.
I was only going into first year, and I was in an all-girls school in Cabra and well… it wasn’t easy. Girls can be really cruel. I wasn’t allowed carry a schoolbag from September so I had to take a trolley bag. You can imagine the bullying that went on. I used to just cry and cry. I had to carry two cushions with me because my spine was so bent I couldn’t sit anywhere and it was just really awful.
The school were amazing, they gave me a second set of books, two lockers… but at the same time I still had to carry a lot and my body was under huge pressure.
February came and the realisation starting setting in as to what was actually happening. I started to google everything ahead of my second surgery – biggest mistake ever. There were horror stories.
I was due to have two titanium rods put into my spine, one on each side, along with screws that would basically form one long solid bone so that my spine wouldn’t be able to move left or right, or up and down. But when they put in the second rod, they hit a nerve in my spine and paralysed me. I was left with no movement in my arms or legs.
They do this thing in an operation called an ‘awake test’ where they wake you up subconsciously and they ask you to move your hands and legs and I couldn’t. Then the surgeon started to panic because it was already seven hours into the operation and it was going to last 10 hours. This was over in Cappagh Hospital, who were amazing, but they couldn’t cope with what was happening because I’d lost so much blood at this stage so they arranged for an ambulance while I was still opened up to take me over to Temple Street’s ICU unit.
I went to sleep in Cappagh at seven o’clock in the morning and woke up in Temple Street at six o’clock the next evening. I still remember, eight years later, waking up and the tubes, the nausea – I just looked like a ghost. I just looked like death.
I didn’t really know what was going on, but my parents were so upset. They were told to get all the family to come down to the hospital immediately. They only told me this last year. That’s when it hit me – I was so close to being gone.
When they put in the second rod, that’s what caused the paralysis. So when they took it back out, and worked on it, they seemed to re-set everything and thankfully it worked. I was able to move my limbs again. It was rough.
After that you have to learn how to walk again, how to use a toilet and shower again. You kind of have to learn everything all over. I was only thirteen. I just kept asking myself, how did this happen to me? I started using a zimmer frame and I was in a plaster of paris case for just under a year. It was really bulky and much bigger than I am, and the heat in the summer. I’ll never forget it. I used to run into the kitchen when my mam wasn’t looking, find the longest fork I could get and give myself a scratch!
But I got over my little hurdle anyway, went for my check-ups, everything was fine, cast off. The scar was grand – it was a happy ending.
So I went on with things, did my Junior Cert, and after all of that and missing the whole of second year in school, it wasn’t easy but I was happy to just keep going. After that, we went to our family holiday home in Leitrim, and my mam eventually gave in and got us a trampoline.
My one passion had been horse riding, but I had to give it up and that crushed me. I used to show jump a lot, but I had to make the choice of risking my health or giving it up. So she ended up getting a trampoline to distract me from the horses and it was all going fine until one day I came down kind of heavy on my knees and I could hear a crack.
I felt no pain at all, I was grand and after that I went back to school. Next thing I know my body had started shifting again, so we went straight to the hospital and x-rays showed that I’d snapped the rod. We tried to work out whether it was the trampoline or just gravity, and it turns out it was just a bit of both.
They scheduled to not have the full surgery again, but to extend the rod further into my spine, to support the broken rod and put it into place. That surgery went beautifully, it was only five hours. I still had to learn how to walk, shower, use a toilet again, but I didn’t need a cast so that was my victory. But I was 16, I was so self-conscious and I didn’t want a nurse, or my mam or anyone looking at me, showering me, bringing me to the toilet.
I was just so angry to be in hospital. To be 16, when everyone else is out making friends, meeting boys and I had no independence. I was stuck in a hospital. I was so much smaller than all the other girls. I was like a normal teenager, thinking: “why don’t I have boobs yet?”, and in the same breath, thinking “why don’t I have a straight body?”
I remember I was going on holidays with my mam and a little kid was just staring at me and my back. I could get over that, it was only a kid, but then their parents would stop and stare and I just wondered how they could be so ignorant?
Turning 17, I was excited to do my Leaving Cert and get out into the real world. First year in college came, and my back was the least of my priorities. I had a great life, I had a great job, meeting everybody and having fun, and then the pain started coming in again.
We were all devastated because I was after having such a good run with my back and we just didn’t see how it could be back again. I went into Cappagh who started giving me epidural injections into my back once every three months, but gradually they weren’t lasting as long as they should have. I got them for a year and a half.
I got my last epidural last September just gone, and I was in the most excruciating pain in the world. I would go to all my appointments on my own, my pain threshold would be quite high, but this was out of this world pain. I came out of the theatre crying for my mum. I realised I couldn’t keep doing this, that there had to be an alternative treatment.
When the pain came, I couldn’t walk, go to college. I couldn’t even lie down. Then I’d have the epidural and still be in excruciating pain afterwards. It was a vicious circle and I couldn’t take it anymore. It started taking over my life. Even on a night out, most people worry about a hangover. The drink wouldn’t even bother me, because I knew I wouldn’t be able to walk for two or three days afterwards. I couldn’t live my life anymore. I just had to stop going out, and I was falling into a routine of going to college, coming home and going to bed.
So this Christmas I made the decision to go into surgery again. It wasn’t easy, and I was petrified I was going to wake up in a wheelchair. I’m only 20, there’s still so much I want to do and I was petrified this was going to go wrong for me. I had spinal monitors used that would direct the surgeon if they were disrupting my brain patterns during surgery, giving them a warning sign if I was close to danger and that really helped this time.
The morning of my surgery came, and I was prepping myself. I had to get a certain amount of college work done beforehand. I’d organised with my lecturers to make up the work I’d be missing out on during recovery and this would lead up to my exams so I did extra assignments and they were really good about it. I got them in the week of surgery and it kept me grounded.
I know where I want to go and I know what I want to be, so I don’t want this little hurdle holding me back.
But the morning of the surgery I woke up with a cold sore. I rang the hospital and told them and they were concerned about doing the surgery. I got on my hands and knees and started begging just to let it go ahead and get through it. We went to the hospital and after hmming and hawing, they agreed to let it go ahead.
Panic set in a little, my nerves were gone and on the way to theatre I started roaring crying. Then my mam started off and then the nurse. I just wanted this to work. This was the surgery that could mean I could get on with my life again.
I woke up that day at 5pm, with my hips fused to my spine. It’s a long road to recovery, but I’m looking forward to getting on with things now.
I’ve never asked for help, because I never saw a need to. I can’t apply for disability services. I don’t think of myself as disabled, but realistically I am. It gets in the way of me leading my life in some ways.
It does make you realise though, that I don’t know if I’m a better or a worse person from before, but I’m grateful. I’m just looking forward to continuing with college, writing a lot and seeing where it all takes me.
