My Scoliosis Story | Scoliosis Awareness Month

For those of you who haven’t heard of the condition, here’s a quick definition: scoliosis is the abnormal twisting and curvature of the spine. Instead of being vertical, the spine resembles an “S” shape. While it can be caused by conditions such as cerebral palsy and muscular dystrophy, the cause of most scoliosis is unknown. It gives you intense back pain, uneven hips, arms and legs, and a rib prominence due to the rotation of the rib cage.

Diagnosis

I was diagnosed with the condition when I was 14 years old. My mum had noticed that my back was uneven, so we decided to go to the doctor’s to get it checked out. He referred me for an x-ray, which confirmed that I had scoliosis. Any age group can get the condition, but it most commonly occurs during the growth spurt just before puberty and this was the case with me. It also happens to be way more common in females.

When I was a teenager, I didn’t like the idea of having metal rods and screws in my back (who would!), so I looked for alternative solutions to surgery. I tried many different things: Pilates, specialist massages, Bowen therapy and I even went to a specialist centre during the summer where I exercised for over 6 hours a day. Although a few of these things did help a little, such as with my posture, my spine continued to worsen. My largest curve was just over 60 degrees and my back pain was increasing. Just sitting up or standing for a short while was incredibly painful; so, it was decided that surgery would be the best route for me to go down.

Chiari Malformation

Not many people know this, but Scoliosis can cause other health problems and unfortunately this was the case for me. I was originally meant to have the scoliosis surgery in 2014; however, it was cancelled as an MRI scan showed that I had another condition called a “Chiari malformation.” I found out that it means the lower part of the brain is pushed down slightly in the spinal canal. There are different causes of it, but mine was caused by my scoliosis.

Although I didn’t have many of the symptoms for chiari, I was told that I would still need to have surgery to treat it or else I wouldn’t be able to have the scoliosis surgery for my spine. This is because chiari can increase the risks of complications during the scoliosis surgery. I was honestly devastated to find out that I would be needing more surgery on top of my spinal fusion and, as you can imagine, I was petrified about having neurosurgery for my brain! But, I had the decompression surgery done (twice) in 2014 and 2015. The recovery was tough with lots of nausea, sickness and neck pain, but I managed to get through it.

Scoliosis 2-Stage Spinal Fusion Surgery

I finally had the two-stage spinal fusion surgery in May 2016 at the Royal National Orthopaedic Hospital (RNOH). The surgeries were four days apart and both lasted around six hours. The first was the anterior part, which focused on the removal of discs and a rib. The second was the posterior fusion, in which they added in the majority of the metal work (the hooks, screws and rods supporting the spine). I was fused T12-L3 for the anterior fusion and T2-L3 for the posterior.

Recovering from scoliosis surgery is tough; however, the RNOH provided great care. Immediately after waking up from the surgeries I was taken to the high dependency unit, where they watch you closely. To control the pain, I was given a morphine pump, which I was able to press every ten minutes. When they feel you are ready, which is usually after a day or two, they take you back to your original ward to recover. I have to mention that the nurses at the RNOH are super nice and helpful. You’re left unable to do much for yourself at all, so you end up relying on them for absolutely everything (washing, dressing, going to the toilet etc). My “roomies” on my ward were also really friendly; it’s so interesting to talk to people who have been through similar experiences as you.

During my time in hospital, I was given some physiotherapy. In fact, the physio guys had me walking the very next day after my second surgery! After not leaving the bed for days due to recovering from the first op, it was very difficult to do this. They encourage patients to get moving as soon as possible as it really helps speed up the recovery process. Another part of my recovery involved wearing a custom back brace, which I had to wear until I was 6 months post-op. Although the brace is very restrictive, it’s there to protect you so it’s very important to wear.

Before I left the hospital, I was given all of my meds and I met with an occupational therapist who told me the right way to get in the shower / walk up the stairs etc. after surgery. In addition, he gave me some medical aids: a helping hand, an elevated toilet seat and a long handled bath brush and shoe horn – which all were very much needed!

Recovery

The transition from recovering at hospital to recovering at home was very hard. Although the medication helped, the pain was still very intense and it was very tough to do anything for myself. At first, I couldn’t even sit up for longer than ten minutes without needing a lie down. There were also a lot of things I had to avoid: bending, twisting, reaching up and lifting anything too heavy. Luckily, I had a lot of support from my loved ones, which I’m very grateful for.

At 6 months post op, I started to feel a little more human. I could sit up comfortably for a lot longer than I could have just a few months before. Also, my back felt a lot looser and I was able to do things for myself again. Of course, I did still get a lot of back pain. My main pain occurred right at the very top of the spine and around the shoulder blades. I also had a small amount of numbness on my right side (where one of the incisions is) and it felt a little restricted to breathe there. At an appointment at the hospital, I was told that these pains were normal considering I was only 6 months post-op and that I could expect these to improve over time. In addition, I was told that the scans showed that everything was healing well and my scars were healing very nicely too. To help ease some of the pain I was having, I was told that I would undergo physiotherapy.

Now (1 Year Post Op)

Now I’m 1 year post-op, I feel so much better. I can do everything for myself and my body is a lot stronger. The numbness I was getting disappeared and my pain level has vastly improved. A few months ago, I finished my physiotherapy sessions at the hospital and was given exercises to do at home every day. These have helped massively as they focus on building my core muscle strength and loosening tight muscles. But even after a year, I’m not 100% back to normal. I still get back pain right at the very top of the spine and every now and then, my back gets quite stiff too. However, even now, I still feel like I’m improving slightly month by month. And as I continue to strengthen my body through exercise and healthy living, I believe I will continue to see improvements. I’m very glad that I had the surgery and would recommend it to those who are thinking about it.

As you can see from the scan above, I got a great correction from my surgery, which I’m so pleased about. Today, I’m straighter and an inch taller than I was a year ago.

I’ve had scoliosis since I was 14 and although there have been many obstacles I’ve had to face before I could have the surgery, I’m so glad I finally had it done. Yes, it has been an incredibly tough few years, but I’m so thankful that I’ve healed well and I’m proud of myself for getting through it all. My health journey has definitely made me stronger in every way. In addition, it’s taught me to be more appreciative of what I have. I’m so thankful that I was able to have this life-changing surgery and for my health and body. I couldn’t even get out of bed without help this time last year and now I’ve recently returned from an amazing trip to the USA!

If you have any questions whatsoever or are going through this yourself, then please feel free to email me on telinapatricia@gmail.com or leave me a comment below – I’d love to help in any way that I can!

Thanks so much for reading!