I am new to the spine-health forums. I will be having a spinal osteotomy and spinal fusion to correct scoliosis and kyphosis from T5-L4/5 on 17th April. I have never had any major surgery before and am quite nervous. I will tell you a little about how I came to develop the conditions as well as other spinal problems.
On 31st August 1992 one week before my 8th birthday, I was in a very serious car accident. My sister was driving and my niece who is the same age as me was in the front passenger seat. Both my sister and niece walked away without a single scratch; however I wasn't so fortunate. That one accident has impacted my life ever since. I don’t know the exact cause of the accident. I was told I had to be cut out of the car by the fire service as the back of the car was completely crushed. I was told I was very lucky that I wasn't wearing my seat belt as it would have either decapitated or strangled me.
I had multiple injuries and had to be resuscitated on the way to hospital. I had broken my back and damaged my spinal cord at T11/12 which left me paralysed from the waist down. I had broken my ribs and punctured my lungs which had to be drained of blood. I also broke my collar bone as well other bone fractures and a lot of bruising all over my body. I was kept in intensive care and for a few weeks was in a coma. I eventually awoke and once stabilised I was transferred to a Spinal Injuries Centre where I spent approximately a year of my life. I was flat on my back for about 6 months and had lost all movement and sensation in my lower body. I was very poorly for a long time as my calcium levels built up and due to the spinal injury I developed problems with kidney function as well as bladder and bowel problems. After a long time of being in hospital the doctors decided that they would let me go home for one day at Christmas. That was the turning point for me and it gave me my determination back to get well and go home for good.
Once I was back at hospital I started to work very hard with the physiotherapist and although I had no movement or sensation in my legs, I was determined to get out of my wheelchair and up on the walking frame. I remember the first time my toes started twitching. Although I couldn't feel it, if I concentrated I could just about make my toes move on one foot. After that I started to get some sensation back in one leg but it was lifeless. Every slight touch against my foot was agony. Gradually I started to get more movement in the other leg but I couldn't feel it. With very intense therapy I gradually built my strength and I gained more and more movement and sensation in my legs. I eventually went from a wheelchair to a walking frame and then to crutches and my mobility progressed everyday over years. I stopped using a wheelchair when I was about 12/13. The doctors were amazed at my progress and I eventually returned home and went back to school. I had to go back to the spinal hospital regularly as a child and am still an outpatient and visit every 3 years now to monitor my kidneys and to review my spine.
I had to wear a body brace from the age of 9-16. I had to wear it all the time apart from in bed. I also had to wear special orthopaedic boots. I started developing scoliosis and kyphosis as I was growing as a result of the spinal cord damage. It never caused me any problems or pain and it stabilised around 40 degrees aged 16. Due to my spinal cord damage the doctors were very reluctant to do anything about the scoliosis and kyphosis.
I lead a fairly normal and active life during my early 20’s and went to university. It is only in the last 3-4 years (from about age 27) that I have started having problems with my back and uncontrollable pain. I started having problems with pain around 2010. I have been getting a lot of pain in my lower back,pelvis/hips and right leg.. I have been to pain clinics and tried TENS, CBT as well as physiotherapy.I have seen spinal consultants about my curvatures, yearly since 2008. They confirmed my scoliosis is now approx 48 degrees and kyphosis is 57 degrees. In 2013 I had a diagnosis of osteoarthritis in my SI joints and facet joints. I also have degeneration of facet joints from T10 down and spine/facet degeneration in L2/L3/L4. As well as the spine problems I also developed a syrinx(cyst) on my spinal cord at T12 and a softening of the spinal cord at T11/12.The spinal cord damage has left me with right side numbness and weakness in my hip and top leg. The spinal cord damage also causes me to suffer chronic constipation which is managed with medication.
Last year I had facet block injections from T10 downwards and my consultant has come to the conclusion that my curvatures are contributing to pain. I I am currently managing pain with mltiple pain medication as well as alternative therapies such as osteopathy and pilates. My pain levels fluctuate and most days are difficult but on very bad days my ability to function normally is affected as I cannot sit, stand or walk a few steps without being in agony. The injections helped but gradually wore off after a couple of months and pain is causing me a lot of problems again. In the meantime I am doing my best to manage working part time (I was working full time but can no longer manage) for Social Services but this is now a real struggle due to the increasing pain and decline in mobility.
In April I will be having a two stage surgery. The first part will be a Spinal Osteotomy. My surgeon explained that he will have to remove some disc/facet joints from my spine. This is being done as parts of my spine are already fused into position as a result of the way my spinal injury healed 21 years ago. He needs to do this as my spine can't be manipulated/corrected without removing the existing fused bone. The second surgery will realign/correct my spine from T5 to L4/L5 with titanium rods and pedicle screws either side.
I have been told I will lose a lot of movement in my spine but it will stabilise the curvatures and improve my posture/alignment. The alternative would to be fuse my spine as it is without correcting the curvature but this reduces chance of pain improving so I have opted for the first procedures.
My surgeon explained the risks of spinal cord/nerve damage during surgery are increased in my case from 1/1000 to 1/100 due to my existing spinal cord damage/scar tissue, syrinx and myelomalacia. He did explain that my spinal cord will be monitored closely during surgery and if there are any issues/concerns then the surgery will be aborted to avoid risk of paralysis etc. He also made me aware of other risks associated with spinal surgery such as bleeding, blood clots, infection, failed fusion, hardware failure etc.
My surgeon has been very reassuring though and told us has never caused cord/nerve damage during spinal surgery and has had high success rates with these procedures. He also confirmed that carrying out surgery was reasonable in my case as I had tried all alternatives to manage pain, and he would not carry it out if there weren't any potential benefits. Although surgery does not guarantee pain will improve, he said various tests/diagnosis indicate my pain correlates with the scoliosis/kyphosis so hopefully there will be an improvement.
I will have to wear a body brace for 3-6 months to restrict my movement.and eventually start physiotherapy at about 6 months. I have been told recovery can take a year plus to get back to ‘normal activities’ but this varies with each patient, complications etc.
I have started my pre op tests and trying to think of all the things I need to prepare at home for my recovery. Like I said I am nervous but I have faith this will be the right thing for me to do.