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My Scoliosis Story
I was diagnosed with Scoliosis at the age of 12 in 1974. My parents did not know what the Scoliosis was and its importance was played down by doctors who told my parents it was only “cosmetic” and nothing to be concerned about. I had been noticing for some time prior to diagnosis, that my right shoulder blade protruded and when sitting on a hard chair. It felt uncomfortable but not painful. I was puzzled when I looked in a mirror that my right rib cage seemed to protrude over the top of my waistband when the other side was flat. I said nothing to my parents. I felt worried but did not want to make a fuss. I had no idea that it was my spine and had never heard of scoliosis. Why should I have heard of it? Nobody I knew had it and lets face it, scoliosis is not mentioned in every day conversation. We were told about the procedure involving the insertion of Harrington Rods. I was terrified whenever it was mentioned. I definately did not want surgery, especially as I was hospital phobic. Doctors did not talk to me directly. They ignored me like I was not there, and spoke to my parents un-nerving me all the more. I felt like they were plotting and scheming and planning a way to get me in to hospital for spinal surgery. The words "scoliosis" and "curvature" reverberated in my head. My parents were not happy about the situation and returned to the GP who referred me to another hospital to see an orthopaedic consultant and surgeon named Mr Cheong-Leen who specialised in Scoliosis and spinal surgery. He took it VERY seriously, and I was referred to another hospital, Queen Mary’s Children’s Hospital in Carshalton, Surrey, where I was put in a Milwaukee brace. Thankfully there were some other children at this hospital with the scoliosis and a lot worse, also wearing the brace. I had to wear this for 23 hours a day and found it almost impossible to tolerate. I was X-rayed almost once a month and the curvature(Cobb angle) was measured. I hated looking at the deformed looking X-rays of my spine and always felt tearful and upset at the appointments. At the start of treatment, my curvature was around 40 degrees. Surgery was discussed again and I flatly refused, terrified at the idea of Harrington Rods. When I was almost 17, the X-rays showed I had stopped growing, and I was released from my torment. The Cobb angle now measured 37 degrees. I was discharged from the care of the hospital. At last I was free!!!! Or so I thought. And no surgery. Life continued. I married in 1982 and in 1987 I decided I wanted to have a family, so I asked my GP to refer me back to Mr Cheong-Leen. He measured the Cobb Angle after nearly 8 years. I was in for a shock. It now measured 48 degrees. I asked him whether I would be able to have children and whether this was wise. He confirmed that there was no problem and no reason why I should not. He could not say categorically whether the curve would get any worse. I returned to my GP and we had discussions about the operation which involved spinal fusion and inserting instruments to stabilise the curve. She put me in touch with a girl who had had surgery and I went to see her at her home. Her operation had been very successful and I longed to have a straight back. In 1989 I asked the GP for a referral to The Royal Orthopaedic Hospital. The Doctor examined me and asked me my future plans. I explained that I wanted to start a family. His words to me at that point were: “Go away and have your family, then come back and see me” I had my first child in 1990 followed by my second in 1993. My back was giving me a lot of pain, pain that had been absent before. I returned to the GP in 1996 and was referred to the local hospital who measured the curve, now 70 degrees, examined me and that was that. No follow ups, nothing. In 1997 I had a miscarriage, followed by the birth of my third child in 1998. With each pregnancy, the pain in my back had increased and by the time I was full term, I could hardly walk at all. The hospital suggested a zimmer frame. In 2002 I met my husband, Mike and in March 2003, 2003, I re-married and my husband Mike understood how distressed I was about my back, both cosmetically and because of the pain. We both went to see our GP who referred me to Leatherhead hospital in Surrey to see Mr Burgoyne, an orthopaedic surgeon who had carried out many scoliosis operations. What a difference. He was supportive, sympathetic and explained everything to me. He made regular appointments to see me saying “I will continue to see you until you make a decision as to whether you want to go ahead with surgery” At the end of March 2003, I had the breast augmentation operation which was very successful as instead of being completely flat and quite deformed on one side, I now felt more feminine with a "B" cup instead of AAAA!! It was a bit of a challenge for the surgeon as the scoliosis had caused deformity to my rib cage and my chest had a strange shape. The implants had to be put under the muscle. It is still not quite "perfect" on the right side, but so much better than before. He also confirmed that it would not affect scoliosis surgery. I returned to see Mr Burgoyne around 4 times to discuss scoliosis surgery. He then dropped a bombshell. He told us that he no longer performed the operation as the funding had been withdrawn by the government. If I still wanted surgery, he would have to refer me to Guys and St Thomas's Hospital in London.I was upset because of the amount of trust I had in him and really wanted him to do the surgery. I went to Guy's Hospital in the autumn of 2005. Mr Lam is my consultant and surgeon and is a scoliosis specialist. He is very nice and has stated that surgery can be performed. I was placed on the waiting list and have been called twice for the operation but my Thyroid condition has prevented me from going ahead as my GP stated that it needs to stabilise before I undergo such a major operation. Bio-chemically, blood tests showed that my levels are within the normal range. I still felt ill.Fatigued, weak and depressed. I decided to research my thyroid condition thoroughly before embarking on such major surgery, mainly because doctors don’t seem to understand my illness and I needed to feel a lot better in order to recover well from such surgery. It is this research, and my continued improvement that has inspired this website….My thyroid condition is stable, my battle is on the road to being won. Now just my spine to think about!!!! At the moment (June 2007) I have found a site which deals with treatment of scoliosis and involves a daily intense exercise programme for 4 weeks as an inpatient at their centre in Ipswich. They have had very good results in reducing the appearance of the rib deformity. I am going along to the free consultation, but the treatment costs around £2800 for the course. Some people have said to me that I an on a uphill struggle for perfection as from their point of view, I am having sugery to try to be perfect. I have had scoliosis since I was 12. If I was so hell bent on perfection, I would have had surgery long before now. When you have to live like this knowing that the curve is progressing by about 5 degrees a year, some sort of action has to be taken and really the question is "what?" I think trying this programme first is a wise move in order to avoid surgery if at all possible. Please click here to view their site I will update the website with the information and my decision, once I have been to the consultation, and of course, should I decide to go ahead, will keep you updated on my progress, together with the results of any improvement. See you until then M x
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