When I was 20 years old I had a spinal fusion. This is where surgeons placed two metal rods down either side of my spine to straighten the curvature. I wrote this a couple of months afterwards and i'm glad I did, as I don't remember much of it anymore...
Scoliosis is a common symptom of Friedreich's Ataxia. This is curvature of the spine. It can create problems such as; twisting your body, crushing lugs, causing major discomfort and generally making your torso look completely out of proportion. An operation is available to correct this, by inserting two metal rods down each side of the spine, using screws and bolts to attach these to the spine. Your spine is then fused and after 3-4 months the bone will start to fuse together, no longer needing the metal rods. However, as it is major surgery they like to keep the rods in there forever, unless some sort of problem arises.
Well, 9 weeks ago today, I endured this delightful operation. I’m not going to lie, i’m trying to be as honest as I can here. It was, without a doubt, the worst experience of my life. But, I got through it, all the pain, tears, heartache, loneliness and frustration. I am also a wuss with pain, so to look back and see what I’ve overcome, is probably the most empowering feeling I’ve ever had.
The doctors/surgeons do not like to carry out this surgery until the curve is at least 45 degrees. I had the pleasure of having two curves, the bottom one measured 63 degrees and the top was 47 degrees. My shoulders and the top of my back were straight and matching. The bottom of my back was more noticeable. My right hip was completely deformed and curved in way more than it should, which made my ribs also twist. It caused me a lot of discomfort. The skin tissue between my hip and rib was constantly getting pinched, whenever I bent over, or turned even slightly. Therefore, in August of last year, after 4 years of being discharged from the scoliosis clinic, my mum and I went to see Dr. Dare at Southampton Hospital. I explained my situation to him and he requested for a couple of x-rays to be taken. These x-rays showed that my curve had progressed and he also informed me that he would’ve offered me surgery all those years ago, but as I had a different consultant back then, he didn’t recommend it. I decided to accept the operation and was told the waiting list was roughly around a year.
It was all a waiting game and I had to try to not change my mind. Finally, the end of April 2013 came and I received a letter, confirming my operation was the 10th June. I don’t think it sank in properly until at least four weeks before. I was terrified, but I knew it was something I had to do to live a more comfortable life.
The morning of the operation came and I’ve never, ever been so nervous. I wasn’t allowed to smoke, so the 30 minute car journey wasn’t the best. We arrived at the Hospital for 7:30am. My mum and her partner came with me. We got called into a pre-op room and some lovely woman came in and got me all prepared. She gave me an over sized hospital gown, tight stockings and 2 wrist bands with my name on and some sort of bar code. A bit later on the surgeon, consultant and anesthetist came in, they went through the procedure with me and made me sign a few forms. I began to cry. I realized I sort of just signed my life away. Before I had any time to feel sorry for myself, another woman and a man appeared to take me down to theater. I said my goodbye’s to mum and they started wheeling my bed off. I literally remember nothing apart from going through those double doors into the operating room. It was the most daunting feeling. I briefly remember them putting two canulers in my hand and that was the last I remember of life before a metal spine!
I remember waking and being so confused. There was a clock directly in front of me which said it was 4:30pm. I went into theater just before 10am and my mum said Dr. Dare rang her at about 2:30pm to say they were nearly finished and it had been a success. Four and a half hours I was cut open for. Ew. I was drifting in and out of sleep and do not remember much. Although I do have a clear memory of turning my head to the right and seeing a spine x-ray on a computer screen. It was mine and it was straight! Awesome!
I was transferred to HDU (High Dependency Unit), this was because of FA and the strain the surgery had on my heart, they kept me on a heart monitor. I remember coming into HDU around 8:30pm and I had my own room with a free t.v. I also was not very nice to nurses. Telling then to f**k off, leave me alone, I felt like guinea pig. Probably much more. I was so happy to see my mum, although that evening is a blur and I remember nothing from then on.
I don’t remember much of being in HDU. I was on lots of morphine, I had a line into my canular and every 5 minutes I could press a button and pain relief went straight into my veins. I also had a canular in my neck where they had to give me a blood transfusion during the op. I had 2 epidural taps in my back, one at the top and one at the bottom, this made my back relatively numb. My scar is in the middle of my back and runs right the way down my spine. It stops about three inches above my tail bone. To the right of my scar, I had a drain in my back which was attached to a bag full of blood. Gross. I also had a catheter, as I couldn’t move much for the first few days of recovering. The day after surgery, I distinctively remember it was about 11am and two Physio Therapists came round to see me. They told me they wanted me to try and stand, with their support, of course. I cried. I felt tooooo painful to try and stand! But I knew that the sooner I did it, the easier it would be. They finally persuaded me and fetched another Physio to stand in front of me to make me feel safer. They helped swing my legs around in bed so that I was sat on the edge. By this point, I was crying my eyes out. It hurt so bad! But I had to. I had a Physio on each arm, the bed at the back of my legs and a lady in front just in case I fell forward. Slowly I stood up. I don’t remember the pain, however, I do remember it being excruciating and the worst pain I’ve ever felt in my life. I was up, screaming and crying, but I was still up. Less than 24 hours after major spinal surgery, I was doing something I was absolutely terrified of doing. See, lots of people with FA have this operation and a lot of them have said that afterwards their progression went really quick. They were unable to stand or walk. Now I can stand unaided with no trouble, I can still walk a little. Same as before the op, maybe a little worse, but it doesn’t affect my life in any way.
I stayed in HDU the Monday until Thursday afternoon. I was really sick them 3 days and in the end the doctors concluded that I was allergic to Morphine, so then I had Fentanyl pain relief instead, which was equally as good. I got moved to an Orthopedic ward, which had three patients in already. They were all elderly, not very friendly and were all confused. I hated the ward, I was always so lonely. Every afternoon I had visitors though, my mum and my boyfriend (now ex) came everyday. My friends, my mums partner, my brother, my niece my sister, my granddad and my mums best friend, all came to visit, most more than once. It was the highlight of my day, seeing people I was close with. I need to mention, the majority of the nurses and doctors were brilliant. They just couldn’t seem to grasp the fact that i’m disabled so couldn’t go running up and down the ward.
I was still being sick, even off the morphine and I wasn’t eating hardly. Come Friday, I felt so weak and frail, something wasn’t right. My wound leaked so much that day, my bed sheets got changed four times. They took my blood pressure and temperature every 2 hours, as a routine thing. On the Friday my BP was down and my temperature was up. I was losing too much fluid from my back and couldn’t put enough into my body in time. I started losing consciousness and fell under for about an hour and half. Meanwhile, they put me on a drip and my mum started worrying. They did everything they could do but I wasn’t waking up. Apparently they were seconds away from hitting the panic button, then I woke up. I remember feeling instantly better, better than I felt all week in fact.
Saturday came and my friend, her boyfriend, my boyfriend, my mums partner and my mum came to visit me. In the later afternoon, I began to feel unwell. I was being sick again and was drifting in and out of consciousness, again! Luckily, this time I was put on a drip before I fell under. I was brought back to normal and felt fine. Sunday came and I felt much, much, much better. I felt I wanted/needed to go home. I asked the nurse when she reckoned I’d be going home and she said because I’d been so sick, I may have to stay in for another week but she said the surgeon will be round tomorrow morning to tell me more.
Monday was the best day. Dr. Dare came round and asked what I was still doing here?! I told him how I’d not been well and he and his consultant read my notes, looked at my wound and asked how I felt. I explained that I felt fine now and all I wanted was to go home. I asked Dr. Dare when I could be discharged and his reply was “tomorrow!” I was so shocked. He said that they just needed an x-ray of my back before they could discharge me, which was arranged for tomorrow morning.
Tuesday morning had arrived! I waited what felt like forever, for the x-ray department to ring the ward to say a time for my x-ray. They rang about 10am and came to take me down for my x-ray about 11am. I couldn’t wait because as soon as a doctor checked my x-ray and signed me off, I could go home! I got wheeled down for an x-ray in my bed. The porters left me outside the x-ray room and said someone would be along shortly. Finally a man and a woman came out of the room and called my name, that’s it, I was so close to going home. I had to stand for the x-ray, I had something to lean on and I had my back against the x-ray board. I just couldn’t stand still, my muscles had wasted away in my legs and my knee kept giving way. I got upset. So the lovely woman put on a apron, crouched down and held my waist whilst the x-ray was being taken. That woman doesn’t know how grateful I was, because of her I was able to go home. I went back to the ward, began to get ready and waited for my mum and boyfriend to come. They arrived about 3pm and began to pack my cards, presents, balloons and bits up. I asked the nurse when I could leave, she turned round and said I wasn’t due to leave until tomorrow. I said my surgeon said I can go today after my x-ray and whether she discharged me or not, I was going home! Finally, a doctor looked at my x-ray, said it was fine and I could go as soon as they sorted my medication out. By this time, it was around 6pm and I was so tired! The nurse came back with a bag which contained only Paracetamol. I didn’t care, I just wanted to be in my own home! We left…
9 weeks on and I am so close to being recovered. My back is still very achy, but that will go in time. I can do everything I could do before. My hips are even and I have no discomfort between my rib and hip. For 5 weeks, I said everyday to my mum that I wish I never had the op. Then something changed. I stopped feeling sorry for myself eventually, the initial pain died down and I got my independence back! I’m now so glad I had the surgery and would tell anyone to go for it. Yeah the first few weeks suck, but time heals everything..