Sandy Smith - Reproduced from The Transverse Myelitis Association Journal
Having had TM for almost 22 years, I still find it very difficult to accept what happened to me 6 months ago. I feel as though I experienced a miracle. I hope that my story will give hope to other TM sufferers.
Friday June 3rd 1988; I was painting the cabin of the fishing boat on which I worked, when I suddenly felt a pain in my right leg and it began to feel numb. Within three hours, the numbness had spread throughout the whole of my lower half and I was rushed to hospital. By now the pain in my right side was so bad, I was punching the sides of the ambulance (and to think a doctor had once told me I had an exceptionally high pain threshold)!
During that first week, I had absolutely no control over my lower half. My right leg was totally paralysed but my left leg was liable to shoot out and kick whoever sat on that side of my bed. My wife and sons bullied me into concentrating every ounce of energy into making my toes move and when my big toe finally moved about a 1⁄2 inch, I had to be propped up to see it move as I couldn't feel anything and wouldn't believe them. From then on, we were all determined I would walk again.The next few months were spent doing intensive physiotherapy. As movement gradually returned to my legs, I developed muscle spasms so fierce that I was yanked out of bed at 3 o'clock one morning, pins and needles in my legs, and then several months of the weirdest sensations imaginable. For days on end, my legs would feel like wet concrete setting, then for no reason, my whole bottom half felt like it was encased in broken glass. There were times when any movement made the inside of my legs feel like a wet cloth being very tightly twisted or my feet felt like big sponges. Sounds crazy, I know, but I felt these sensations even though my lower half was completely numb. It was extremely uncomfortable. Then came what was probably the worst time of all, when I was hit with bouts of white hot pain, mostly in my right side and leg, lasting for up to 20 to 25 minutes and which caused me to black out. The strange thing was, when I regained consciousness, the pain had always gone. This was when my physiotherapists refused to treat me as "they couldn't cope with the pain I was having" so it was back to hospital for another month. But still no answers. Electrical tests showed that the nerves from my brain to my feet were intact, but something appeared to be stopping the messages getting through. No one could explain why.
We were told that Transverse Myelitis was simply an expression used by doctors when there was inflammation in the spinal column and no-one knew why. We were to spend the next 11 years thinking this!
By February 1989 I was able to drag myself along with elbow crutches. A consultant then told me I would probably never walk and would always have to live with that pain. We found a private clinic and, mercifully, acupuncture reduced the pain levels to a more manageable level so that I no longer passed out. I still had no feeling in my lower half, but with endless exercise, I slowly began to walk. We got an exercise bike and, at first, my wife had to turn the right pedal until my left leg was strong enough to allow me to pedal unaided. I spent hours trying to walk to the beat of singing nursery rhymes and this helped improve my co-ordination. My son took me swimming, but usually swam close to the edge of the pool with me, as my right leg was liable to suddenly feel like lead and pull me under. There was still no feeling in my lower half, except for pain, which meant that when I sat in a chair, my top half felt like it was floating. Despite this, I was determined to walk.
I was back in hospital after a fairly major relapse in October 1999 when a young doctor asked me to be his "test" case. Because this condition is so rare, I appeared before about 30 senior consultants. A chance remark by this young doctor resulted in us finding the TM Association in the USA on the Internet and for the first time in 11 1⁄2 years, I realised that TM, although very rare, is a recognised condition and that other people suffer from it. The relief was indescribable. Four years later we met other sufferers for the first time and I no longer felt isolated. We now attend the TM Scotland Support Group which, with the information the TMA sends us, is an enormous support.
My 'miracle' happened in 2010.
Last August I had a mastectomy for breast cancer which was pretty scary at the time. Thankfully, the cancer appears to be gone. Prof Doug Kerr warned us there was a possibility the trauma of the cancer surgery may trigger a TM episode and this is precisely what happened four weeks after the surgery. Within a few hours, my legs seized up completely and felt as solid as steel. I had no idea what was happening, but knew it was serious. The pain was indescribable and I was rushed to hospital. By that time, my bladder had stopped working and was at capacity, so I was catheterised, given morphine and intravenous steroid injections. X-rays were clear and an MRI scan showed the usual area of inflammation, so we knew it wasn't a new attack. Three days later, the pain was reduced with medication and I could walk a few steps with help. Lots of student doctors spent quite a lot time with me as they don't often get the chance to see TM.
Then on day four, during a pin-prick test, I suddenly felt the pin on my legs. The students were shocked when I burst into tears. It was the first time I had felt my lower half in over 21 years. I was probably more emotional than when TM first struck. I still had no sensation in the soles of my feet, but everyone was amazed at what seemed like a miracle. My family and friends were completely astounded and I can still see our youngest granddaughter with tears in her eyes as she said "Oh Di, it's a miracle." (Di is a local name for Grand-dad.) Regaining sensation brought a whole set of new problems. Once again, I was unable to walk and my bowel went into overdrive which I couldn't control. My bladder flow increased, but much to my concern, I couldn't tell the difference between bladder and bowel. I was a psychological wreck, couldn't understand what was happening to my body, and was terrified that I might lose the feeling in my lower half again
Regular pain medication kept the pain levels manageable. I began learning to walk in a harness, but was still unable to weight-bear. After several days of physiotherapy, sensation returned to the soles of my feet but my bladder stopped working for almost a day. My son put my slippers on for me and I thought my feet were being crushed. Then I realised, I had forgotten what it was to feel "normal". I began to have sensations similar to those of the first year of TM but for shorter periods - pins and needles, setting concrete, stretched tendons, toes felt like dough with gravel between them, etc. I began to feel as though the TM had gone into reverse which seems crazy. I continued to have daily physiotherapy to try and get me walking again, but my legs were extremely heavy and very difficult to control. Two weeks later, I found I could sit comfortably in a chair (for short periods) for the first time in years. My toes, which had been clawed for years, began to lie flat again. I stopped throwing my right leg when trying to walk which allowed me to use a walker frame. My bladder and bowel began to slowly improve and after a lot of hard work learning to walk again, I can walk pretty much as I did a year ago.
It has been an emotional rollercoaster and, at times, a psychological nightmare. But six months later, I still have approximately 90% surface feeling in my lower half and a much improved bladder control. Walking is still difficult, but I feel that every day I walk is a bonus and being able to feel my lower half after all these years is wonderful.
Despite having a lumbar puncture, brain scan and gallium scan, no one seems to have an explanation as to why I regained so much sensation after 21 years. I would be very grateful if anyone can let me know if they are aware of anything similar to this happening. I am extremely grateful for all the support I have from the medical staff, my family and fellow TM sufferers and hope that my story will show that no matter how much time passes, it is still possible to improve.
Sandy is married to Margaret, the wonderful artist who graciously and generously donated her beautiful artwork for the TMA greeting card awareness and fundraising program. Sandy and Margaret are active members of Margaret Shearer‘s very special TMA Support Group in Scotland.