Anyone experienced being ignored & fobbed off by doctor/neurologist following diagnosis of Chiari malformation?
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I was diagnosed with a chiari malformation in November 2012 although my consultant was apparently already aware of its existence 3years before but decided not to tell me. I had previously had 2 ruptured discs in my cervical spine within a year of each other & the chiari was found incidentally via a routine MRI leading up to surgery for the first disc. I have been in chronic pain for approx 5 years following birth of my daughter. I have constant leg pain and left arm pain, unbelievably uncomfortable pressure in my head with occipital headaches usually caused through everyday activity such as lifting, bending down or through doing anything that causes strain of any kind, I can also tick many of the common symptoms associated with Chiari but I would be here all day listing them! Since researching Chiari myself, many issues and occurrences I've experienced over the last few years make a lot of sense & I am at the end of my tether trying to explain my pain/symptoms to my GP/neurologist etc. I feel as though they view me as some crazed attention seeking hypochondriac! So far I've been told I have plain old nerve damage! Depression, stress & anxiety! Tendonitis! Common backache! Etc etc etc. I work full time have 3 young children & many other responsibilities, I am not lazy & not obsessive so why am I being treated as such? Life has become a painful struggle as other chiari sufferers will be able to empathise with. I really don't want surgery again unless absolutely necessary but I do need acknowledgement. Nobody has ever had an indepth conversation with me about the condition and I'm frightened to go back to the hospital as I'm always coming away no further forward. I'm anxious & stressed through being ignored & left to get on with it without any help or advice on how to manage it. One so called medical professional told me chiari was very common and could never cause such symptoms, another told me chiari was a mild illness & nothing to worry about, and another didn't even know what it was. I live in Oxford and the Radcliffe healthcare trust is supposed to be world class but I haven't experienced that at all. Sorry to go on & on but I'm desperate for support & understanding and figure only a fellow chiari sufferer would understand (hopefully, anyway). Any ideas or solutions anyone, on getting these professionals to listen?? Or anyone had similar experiences?
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