Guest guest Posted December 15, 2011 Report Share Posted December 15, 2011 Hi, I don't have a syrinx but I do have tonsilar ectopia (chiari 0) and Post-traumatic cranio-cervical instability. I did have some loss of temperature recognition in my foot, which was diagnosed as 'small fibre neuropathy' - but no-one told me why I had this. With regard to the more general neurology check for sensation in the limbs, where they ask you whether something is soft (usually cotton wool) or whether it's sharp (a needle) I could always tell which was which and therefore passed the tests, even though I did have certainly a 'reduction' of sensation around the shin area. I came to realise (far too late to make any difference) that the reason I could tell the difference was not because I could particularly feel the 'sharpness', no it was because I could differentiate between the different pressures applied to the underlying tissues. However, the skin was very dry, I lost all the hair from my lower legs (I could pull it out with my fingers easily, without any pain) and the skin eventually took on a glassy nature - yet non of this was ever noted in my records, so there was no 'clinical evidence' of any type of sensory deficit of this area. Has anybody ever had recognition, or explanation of why this happens? For anyone else who suffers from this, I have found that a twice a week lower leg massage with 'Diprobase' emollient cream, has improved the skin condition, if nothing else. Incidentally, I never had any skin problems before my accident. Best Wishes Barbara (UK) Thanks Terry Lynne, for the very apt quote: 'Life is not about waiting for the storms to pass...it's about learning how to Dance in the Rain' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2011 Report Share Posted December 15, 2011 No diagnosis yet, but responses below... --- ThatBarbaraLady@... wrote: > I don't have a syrinx but I do have tonsilar ectopia (chiari 0) > and Post-traumatic cranio-cervical instability. I have > some loss of temperature recognition in my foot My cold/temperature sensitivity below the knees is slow. Heat sensitivity in hands and fingers is slow. Sensitivity to ambient temperature is poor all over. I have to touch my nose and pay attention to heart rate etc to figure out whether I need more clothes on. > With regard to soft or sharp I passed the tests, even though I have a 'reduction' of sensation around the shin area. Same here; in my left shin and right forearm. My pinprick tests on the shin are patchy for pin/sharp vs pin/not sharp. > the reason I could tell the difference was because > I could differentiate between the different pressures > applied to the underlying tissues. Makes sense. The standard test is a poor representation of reality, because it cannot recognize subtle loss of function. > the skin was very dry, I lost all the hair from my lower legs I have dry flaky skin all over and have been losing hair. > Has anybody ever had recognition, or explanation of why? Nope, other than my own knowledge of how innervation works. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2011 Report Share Posted December 15, 2011 Loss of sensation to hot and cold is a classic symptom. My daughter once burned her forearm on a curling iron and did not know it. Fortunately, her friend saw it happen. Barbara Sent from my iPhone > A strange thing happened to me yesterday and figured I would ask the group what they think. > > I bought my daughter a no no system for hair removal. As we were trying this, my daughter said that she could feel extreme heat from the unit on her legs. I felt no heat. As I moved it up my leg and reached the area behind my knee, there was a huge sensation of hot there but as I moved it back down my calf, I felt no heat at all. > > I remember reading something about loss of sensation from a syrinx at one point. Could this be the case here or can Chiari itself cause this loss of sensation. > > My condition definitely is declining, my ability to normally function has become less and less in the last year. I have not had any appointments to TCI since 2008, when I had my cranial fusion, nor have I had any MRI's since. > > Any input on this will be much appreciated!! > > cindy > > Quote Link to comment Share on other sites More sharing options...
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