Marjory Muir
I was first diagnosed with scoliosis in 1985, at the age of 25, when I went to my GP with back pain. I was referred to my local hospital in Scotland, where I was advised by the consultant that they would refer me for physiotherapy to try and build up the muscles around my spine to strengthen my back. I was told at this time that surgery was not an option because I was too old and that they only operated on teenage patients. They also told me that because I had stopped growing my scoliosis would not get any worse; I have since discovered that this is not necessarily the case.
Over the years I have adapted to my back pain, knew what I could and could not do, did all my recommended exercises and avoided doing anything which I knew would aggravate my back pain. I managed my condition fairly well until I had my son in 1999, and that is when I felt that my back pain and whole shape started to change for the worse. Personally, I think my scoliosis was aggravated by my pregnancy and the stresses that this places upon your body. My back pain gradually became worse, and in 2004, after another few sessions of physiotherapy, I was again referred to the consultant. I had severe sciatica in my left leg causing numbness and pins and needles. The consultant advised me that the nerve problems I had were secondary to my scoliosis and advised me that this problem could not be sorted. Instead, he suggested doing a laminectomy at L3/L4 to try and relieve the pressure on the nerves, and since I was in considerable pain I decided it would be worthwhile trying this procedure.
I had this operation in January, 2005, which did provide a bit of temporary relief, but eventually the space made by the laminectomy started to close and the pressure on the nerve roots built up again. I also tried nerve root injections in June, 2006, but these were extremely painful and had no effect whatsoever in my particular case. At my next consultation in September, 2006, I was told that he could do no more for me because it was too dangerous to correct the curve. I was advised that I would require both anterior and posterior surgery to de-rotate my spine and rib cage and to straighten out the curve and I was told that the major risk attached to surgery of this nature was death! After being given such bad news I assumed that I would just have to accept that I was going to have back pain for the rest of my life and that my scoliosis would continue to deteriorate over the coming years.
However, in 2005, I had picked up a leaflet about SAUK while visiting the hospital for one of my many courses of physiotherapy. I joined SAUK and had received a couple of their newsletters by the time I was told that nothing more could be done. I read some of the articles about people in their 40-50s who had undergone surgery to correct their scoliosis with good results, and in December, 2006, I decided that it might be worthwhile to see a scoliosis specialist for a second opinion. I booked a private consultation and was amazed to be told that he was of the opinion that he would be able to undertake an operation that would correct my scoliosis and hopefully improve my back pain. I decided that I would go ahead and have the operation.
The waiting list for operation would have been about 12 months and I would have had to obtain funding from my local NHS hospital. Since I did not want to face a long drawn out battle with my local NHS to try and get the funding, I decided that I would have the operation done privately. I am not a wealthy person and I used most of my savings to pay for this treatment, but I came to the conclusion that what better could you spend your money on than your health. Because of going private, I only had to wait 3 weeks for my operation.
I was admitted on 25th January, 2007; the operation went very well. I spent 1 day in intensive care and a further 12 days in hospital recuperating. My operation consisted of spinal fusion from T2-L3, which is 16 vertebrae, and I now have 40 centimeter titanium rods either side of my spine, 15 screws and three hooks. I was a bit shocked when I saw my X-rays post operatively, but my consultant obviously did what needed to be done.
I was housebound for a further 2 weeks when I got home from hospital and then gradually started getting out for short periods, but I found that I got very tired and needed to lie down a lot. I also had to wear a spinal brace for 3 months post surgery, which was very attractive; it was red with teddy bears on it! I was signed off work for 6 months, but I started going in for an hour or so at a time once I was allowed to drive, which was 8 weeks post surgery. I went back to work, doing short hours, 4 days a week, after 4 months. I work in an office environment but I must admit that I find that I feel much better on the days that I am not working as I keep myself moving about more. Sitting is not the best thing to do when you have spinal problems.
Now 2 and a half years down the line, I am still having lots of different aches and pains, particularly in my shoulders, but I think that the aches are probably because I was bent for such a long time that all the muscles and tendons are fighting against being re-positioned to where they should have been in the first place. I find hydrotherapy is a wonderful treatment as you can do so much more in the water than on dry land.
I am pleased that I went ahead with surgery because if I had not done so, I would just have become more bent, in more pain and probably ended up in a wheelchair. Now, although my spinal mobility is fairly restricted, I am certainly not in as much pain as I was and I am hopeful that my spine will not deteriorate any further. Surgery may not be the best option for some scoliosis patients, and many patients will not want to have surgery, but, from my own viewpoint it has certainly helped me.
If anybody would like to contact Marjory to discuss their scoliosis problems she is part of our Regional Secretary network and she would be only too happy to listen and provide any advice that she can. To be put in contact with Marjory please become a member.