Chari symtoms

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Hi all I an new on here and looking for some advice about a diagnosis I received around 10 years ago . I went for a MRI scan because I had passed out a couple of times but the Specialist told me that I had a Chari Malformation but is was just a coincidental find and was not causing me any problems. The problem is that now I seem to be getting pain in all my shoulders neck and arms it's getting to the stage that even painfull writing this post. I am also getting tested at a sleep clinic for sleep at Mia and restless leg syndrome , but I just get painkillers from the doc that don't seem to be helping . what are the chances that it is my chari that is now causing my problems ? the doc says not because my chari was just a coincidental find ! any chance he could be wrong ? thanks Alex

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  • Posted

    Hey Alex,

    The worst thing about having Chiari is that even the majority of specialists such as Neurologists and Neurosurgeons don't know much, if anything, about Chiari. Radiographers like to write on their reports that it was an "incidental finding" or that it is unlikely to be causing symptoms, mainly because they are unaware of just how many symptoms are related to it. I see it time and time again on Facebook, in the various groups! Oh, if you haven't already, maybe join a group or two for support and Information, as it can be really helpful.

    I had an MRI because they initially thought I had a brain tumour, and the radiographer noted that I had Chiari but that it was unlikely to be the cause of my symptoms. I saw a Neurologist who didn't even bother to look at my MRI, and told me that the Chiari would not be the cause of symptoms. He then went on to tell me that it was likely to be some childhood trauma manifesting itself in physical symptoms!!!

    Well, I was not very happy with this so I asked my GP to refer me to a Neurosurgeon! When I saw him a couple of months later, he told me I was herniated 1.5cm which is a huge amount (most people are under 1cm) and that even laying down, my CSF flow was almost entirely blocked. I've now had surgery which involved a Foramen Magnum decompression, C1 Laminectomy and a Duraplasty... But the first person I saw said my Chiari wasn't relevant.

    So, it just goes to show that seeing the right person is really key. Ask your GP to refer you to a Neurosurgeon, if they're good, then they should do that for you, based on the findings of your previous MRI. I think it's very likely that Chiari could be causing your symptoms, but I'm not a doctor or medically trained in any way! It's just I know from my experience that pain in the head, neck, shoulders and arms was a classic symptom, and a lot of people also have this problem with Chiari, especially when it has caused a syrinx/syringomyelia.

    Hope you manage to see someone that can help you. Just let me know if i can help in any way.

    All the best, Kerenza.

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    • Posted

      Hi Kerenza, thanks for the reply to my post I just found the notification in my spam e mail 😔 that' how I never got back to you sooner. I am so glad you got the proper diagnosis in the end , it's right what you say it's all about getting the right person who knows how many symtoms there are with a Chari . I have not been so lucky as I am always being advised by my GP that the Chari is not the cause of my problems . you are living proof that the symptoms can be misdiagnosed, and that seems to be a big problem a lot of people face . I will keep trying with my GP but I think she is getting pretty fed up with me going on about the Chari as I mention it nearly every time I see her. wish you all the best for the future hope you start to feel better soon .Alex

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    • Posted

      Hi Karenza, I found out 5 years ago thru MRI that I have a Chiari type 1 but my GP said it wasn't an issue then. Fast forward 5 yrs to date and I am now symptomatic, mostly painful muscle spasms, neck and shoulder pain and some headaches. I saw a Neurosurgeon and he recommended the Decompression Surgery. My question is, does it work to relieve your symptoms? Have they come back? What advise can you give?

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