Newly diagnosed initial appointment help

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Hi all,

I was diagnosed with an 8 MM. Chiari in April. It was a shock but certainly answered lots of questions and my symptoms tick lots of boxes. I am lucky that they are mild at the mo. Anyway, today I had an appointment at the QE hospital in Birmingham. The neurologist didn't really help at all and basically told me to avoid stress. I came out not knowing if I will be seen again have regular mris. The doctor hadn't even looked at my images from the scan but said he will write to me. I just wondered if others in the same position have regular scans? I just don't feel I know anymore and am confused. Thank you Anna

 

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  • Posted

    Hi Anna, it may because your symptoms are mild, see what he say when he writes to you. I was asked if I could live with my symptoms but they were getting really bad so I had decompression surgery to stop the symptoms getting worse. If yours aren't too bad he may just suggest seeing you on a later date to keep an eye on symptoms, doesn't sound like he's discharged you. I don't think they do anything unless they get really bad. Hopefully stay mild. X
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  • Posted

    Hi anna,

    Usually doctors don't take time to explain anything to the patient. They don't understand how the patients feels knowing that they just leave you hanging.

    If this was your first doctor, seek another doctor but a specialist in chiari. Keep looking for one that will make you feel conformable and answer all your questions. Good luckn

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  • Posted

    Thank you for your replies. I am 34 and don't know about syringomyelia the doctor hadn't looked at the Mri images. All I want is to know I will be kept an eye on. Sometimes feel that some doctors don't realise how highly anticipated these appointments are! I was told my brain was sagging! Lol lovely terminology :-)
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    • Posted

      Sorry, if a doctor told you that your brain was sagging, that is not correct. As for me I was told that my right side if my brain had fallen. So here I was telling everyone that my brain had fallen.LOL

      It took 3 doctors to finally finding the neurosurgeon that was knowledgeable with chiari and explained what it was. Had surgery within one month as I was having too many problems.

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  • Posted

    Hi Anna

    Can I ask did you have a MRI as an outpatient? How long did it take for your results to come back? I'm having terrible symptoms at the moment but I'm waiting for my MRI results

    Thanks

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