Diagnosed with Chiari Malformation 1

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Hi there,

I was diagnosed with Chiari Malformation yesterday with a herniation of 9mm. I've had headaches and dizziness everyday for about 15 years now and doctors keep telling me its stress. Also sleep apnea, panic attacks, pins and needles etc ... I had an MRI yesterday and was told I had ACM. This morning I got a phone call from one of the interns at the hospital telling me to ignore everything they told me yesterday because it was a wrong diagnosis. I don't understand how they can tell me I have 9mm herniation and then tell me I don't. Has this happened to anyone else?

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  • Posted

    Hi honey,hope all is well the best answer I can give you is to speak to the Ann conroy trust for your best course of action ❤️ Goes out to ya this has happened to lots of us
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  • Posted

    Morning Christina, 

    I was told by a neurosurgeon at Queen’s Sq hospital that mine isn’t bad enough to warrant any treatment however, they hadn’t seen a scan at that time. I was also advised in the same appointment that they would not just opporate as it’s a very serious opporation.  I went away feeling quite confused as I had been suffering since my twenties and now in my fifty’s. I them had another appointment arrive from a Mr Kitchen who I now know as head of neurosurgery, I walked straight into his office, he advised me he had requested scans from Charing Cross and we needed to opporate within the next 6 weeks. 

    I had decompression surgery July 2016 my recovery hasn’t been entirely without problems but, feel optimistic I’m recovering as expected. I’m very thankful to the team at Queens Square. 

    Christina ask for a second opinion if necessary,  you sometimes need to push a little as some doctors go for medicating the symptoms, which will not benefit you. Good luck darling, It’s an awful thing to live with, we are always here to support as much as we can. 

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  • Posted

    I’ve learned after suffering 7 years before I found out I had CM to request copies of all medical records, reports, MRI’s, lab work, x-rays. The MRI and report should show it if it’s there and it’s your right to have a copy of all medical records. Then you can take your records to another doctor for a second opinion. 
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  • Posted

    I agree with the person who said to request all your records. Honestly, it could be that they actually read the wrong MRI and told you incorrectly. It is a HIPAA violation, but definitely possible. However, as I am sure my fellow chiarian's would agree, it goes misdiagnosed far too often and we are left in the dark about what is causing our symptoms for too long. Request your records. Look at the MRI disk they give you. A 9mm herniation is not going to pop out at you, but the naked eye should be able to decipher it between normal and not normal (compare and contrast other MRI's from a google search). Obviously it's not recommended you "self diagnose", but it should be enough to prompt you to know if you need to seek another opinion. 

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  • Posted

    Thank you all for your comments. I've asked the hospital to send me my scans. I had a scan back in 2009 which they could apparently see the ACM on as well so have asked for both. Unfortunately I live in luxembourg so I'm having to communicate with the doctors in French. Im hoping I can find a doctor in the UK that I can initially contact via email for advice. Thanks again ?

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  • Posted

    Hi Christina,

    I an sorry to hear about the confusion of your diagnosis, my suggestion would be writing them to give you a full report in writing with the copy of MRI/Cine scan - with this information - you ask your doctor to refer you to neurologist (second opinion) explain to them how terrible you are with your symptom and ask them to help you to sort it out until you have your life back - if you like to write to Neurosurgeon in the UK then I have a successful operation with Mr Graham Flint - Neurosurgeon of Queen Elizabeth Hospital in Birmingham UK.

     

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