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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10 Replies

  • Posted

    Hi Mel, I certainly can empathise with you, I had all that said to me and more. Now I have had my decompression surgery BUT once I had the surgery I have basically been left to get on with it. I now have all the symptoms back that I had pre surgery but am not being given any help. I could go on and on but I won't bore you lol. The very best help and advice is to go on the Ann Conroy website on Facebook. There are a lot of people on there who are at different stages of the condition.

    Good luck and hope to see you on there.

    Marina

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    • Posted

      Thanks Marina nice to know I'm not alone. I'm currently not on Facebook but sounds like it might be a great source of support & advice. Sorry to hear you're not being helped I think it's awful that we're ignored like we are. Time to take a stand I think !!!! See u on Facebook soon.

      Mel smile

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  • Posted

    HI I was browsing through here for Chiari Malformation type 0 information adn saw your post.  Do you think you might have Elhers Danlos syndrome?  I don't mean to scare you but has no one suggested that?  I found the malformation after my 2 cervical discs went in my neck.  I had an upright MRI and they saw it.  They now think Ehlers Danlos and all the other things like the discs going tie in with it as it is a connective tissue disorder.  Sometimes my wrist hurts but I thought carpal tunnel.  I don't have any joint dislocation but I "click" recently and I never did before. Anyway I am going for testing but apparently it is often mis-diagnosed as hypochondria as you have small ailments and many do not know about the syndrome. Other small pointers could be a vitamin d deficiency, aching body (at times)  Having a child makes the tissues weaker and another sign is tendonitis.  I do not mean to scare you AT ALL but I felt for you as sometimes I felt like I had all these little things and that I was "falling apart" and literally I only just got diagnosed and your symptoms are so similar to mine! I am 36 and up until now was active, lifted some heavy garden furniture and it my arm hurt, went for an MRI and got the diagnosis....
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  • Posted

    I sympathize with you, the medical professionseem to have a block about the condition. Have you seen Youtube video re Chiari? It explains how different symptoms come and go thus the medical proffession treat the symptoms and not the complaint.Not sure what they can do? Other than make the public and medics more aware of the Malformation.
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  • Posted

    HI  Maybe try the Chiari Institure in the US around Long Island area?  I watched this documentary on You Tube the other day called Mystery Diagnosis -Chiari Malformation, EDS where there seemed to be a very good doctor who took a lady's concerns more seriously...
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  • Posted

    Hi Mel, just to let you know that I really do feel for you. I have no answers and am trudging along a similar journey. Iv just read Raphael D'Alonzo's book Contents under Pressure. Even though he is Male and American, he has the same story to tell. Uncanny how much of it I was saying " that's so like me!" Felt quite inspired reading it as he is well now, but overall it is very hard to understand drs attitude to this. Good luck, I'm sorry I haven't got anything helpful to say but just wanted to add my support xx

    Debbie

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  • Posted

    Hi Mel,

    Unfortunately your story is all too familiar, and almost mirrors my story! I was suffering for years and kept going back and seeing different specialists and consultants, I was told I was stressed, depressed, anxious etc etc etc..... I was none of those, I was happy and have two beautiful children, was studying for a business degree whilst working and raising my family, I was loving life, all except for one thing! The horrific pain and fatigue and a whole list of other things, just like yourself! I was ignored for years, until I could hardly walk, and only then was I scanned because my father came with me and put his foot down and demanded an MRI, it's shocking and upsetting not to be believed!

    I was finally diagnosed in October 2013 with Chiari & Syringomyelia. Unfortunately as I had been left undiagnosed for so long, the syrinx were extensive and have caused permanent spinal cord damage, so I am now in a wheelchair!!

    It's hugely upsetting not being listened to or believed. I've always been a "power through" kind of person and I'd tried for so long to power through but as you know with Chiari it's impossible sometimes.

    I had decompression surgery in January 2014 and I was lucky to find an amazing neurosurgeon. So I was lucky that the surgery could prevent further symptoms, but unlucky in that a lot of damage had already been done.

    I find it shocking that in this country, this condition and other related conditions are all treated so differently and it's still a relatively unheard of.

    I still struggle day by day and I wished I had listened to my own body and stamped my feet earlier, then maybe I wouldnt be so badly affected.

    My advice is, you know yourself better than any doctor, trust yourself and shout til somebody listens, this is your life and your future, not theirs, so make people listen!!

    There also a book that helped me, written by Rick Labuda and it's called CONQUER CHIARI. Hope it helps.

    Take care and don't give up til somebody listens to you 💗

    Ps. Facebook has some good support pages on there. xxxxx

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  • Posted

    Hi,

    I'm sorry to hear what you are going through.

    I am recently diagnosed (8mm descent) and met with the neurologist this morning. He has told me that Chiari 1 is 'innocent' of causing my symptoms and that they're caused by 's war and tear'.

    I now feel really stupid.

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  • Posted

    Mel I've posted a longer reply on your other comment and I am so sorry. I'm  frustrated with the GPs who don't seem to know much about the condition even sending patients to the wrong specialist.
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    • Posted

      Actually I have other problems and saw a cardiologist the other day with the agreement sort this out first and then whats left must be CM!
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