Complex Regional Pain Syndrome
I think that it would be useful to you to have a little bit of background history regarding Richard’s journey. Richard was injured whilst playing rugby in February 2007 and hurt his ankle. Subsequent to that he developed a severe Giardia infection in the March. After this his ankle was swollen and very painful.
He was diagnosed as having Reiter’s Syndrome, which is an autoimmune form of arthritis. He was treated by a rheumatologist with painkillers and immunosuppressant drugs for two years which left him vulnerable to constant illness and did nothing to relieve his symptoms in the long term.
His condition worsened until in June of 2009, he was depressed, constantly off school sick and in constant pain.
We requested a MRI to be performed as we had lost faith in the diagnosis and it was then that he was finally correctly diagnosed as having a large Brody’s abscess in his lower right tibia. There followed further misfortune when the initial surgeon failed to debride the abscess, and he had excruciating pain for a further two months.
Despite having a repeat CT scan, we were assured that everything was fine and that there was no explanation for his level of pain. Only after seeking a second opinion did we hear that the abscess was still intact and he had a second operation to remove it.
After this operation he was told that he would be pain free but in fact the pain got worse. Fortunately the very caring surgeon was able to diagnose him as having developed Chronic Regional Pain syndrome and thus started our search for a form of treatment that would relieve him of enough pain in order to function normally.
We had to remove Richard from his school in his grade 11 year and he has been enrolled at a home school that accommodates children who cannot cope with ‘normal” school situations, but even then, he has been in too much pain to attend this school. We took him for physiotherapy, hydrotherapy and a lot of supportive psychological support and hypnotherapy. Richard has had a wide variety of pain killers and has even been admitted to a high care unit every day for a week to have Ketamine administered intravenously. Whilst these treatment have helped Richard to a small degree, he did not gather any real pain relief and as a result has become more and more reluctant to believe that anything could help him. Richard’s pain involved the following symptoms: constant deep throbbing pain from below his ankle to mid shin level on a grade of between 8 an 10 out of 10, sharp excruciating “electric” shooting pain up to his knee and extreme sensitivity to temperature and even the slightest touch. If someone accidently brushed against his foot he would faint from the pain and then be in agony for hours afterwards.
Needless to say, this has been very difficult for our whole family, as it is impossible to never touch his foot. He became withdrawn from all normal activity and had no social life at all.
However, that has all changed now, and although I am aware that I sound as if I am appearing in an infomercial, the nerve mapping machine (NMS neuromodulation device) has changed Richard’s life. His level of sensitivity has come right down to a more manageable level, if he gets touched on his foot, it is still unpleasant, but no longer catastrophic. He goes for longer without painkillers, is getting some normal sleep at night and has had friends around three times in the last month. What was however momentous for us, was that he himself asked if he could go and watch a movie with his friends! You have to understand the significance of that – crowded places were a nightmare for Richard, he could not control who would knock his leg, he got tired easily and the surging pain causes him to collapse without him even being touched, all contributing to his isolation. He was dropped off and collected like any other normal 17 year old and that was amazing for us all!
Thank you for allowing us to use the machine at home for the last month, and if it is possible for us to keep it until you have the new units ready for sale, we will be eternally grateful. We would like to thank Phyllis Berger and Anna at the Pain Management Clinic for suggesting to us that we try this machine – they have never given up trying to help Richard. Lastly, Richard was sufficiently improved from starting the treatments, that he was able to attend his school, and with their help, he wrote his first three prelims and has passed all three subjects with flying colours!
Steve and Lee Cornish
Courtesy Xavant Technology (Supplier of the NMS 460 neuromodulation device)