I was diagnosed withChiari in January, how quickly would surgery happen? UK

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I am awaiting a neurology appointment in a few weeks, I wasn't told how many mm out I was or if I had fluid build up. Hopefully these will be answered in April. 

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  • Posted

    Hi dear

    I was diagnosed last year this time and haven't seen neurosurgeon yet. I will see one on this Thursday. I will let you know.

    Take care

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    • Posted

      Thanks for replying. The notification went to my junk box sorry for delay in responding. While you have been waiting,( if you don't mind me asking) have you been eligible for things to help round the house etc? 

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  • Posted

    Hi, I was finally diagnosed in October last year. Approx 8mm herniation with syrinx. I saw a neurologist in the Royal Victoria in Belfast who advised the UK isn't as quick to recommend surgery as they were years ago. He wants a neurosurgeon who has a particular interest in Chiari to see me, also at the Royal. I thought this would be fairly quick but after chasing for 5 mths I have an appointment at the end of March. I think in NI and UK they assess degree of herniation and severity of symptoms to decide whether surgery is necessary. Where are you being seen?

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    • Posted

      Hi, thank you for replying. I'm due up at the Royal the first week of April. It was a pretty bad day again with the vertigo and I'm feeling a bit impatient with the long waiting lists. The doctor at daisy hill just said "you have chiari "   no mention of measurements etc, at this stage I'm seriously considering a wheelchair, it would be safer. 

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    • Posted

      God it's so good to chat to someone else from NI! The waiting in between appointments is hard to deal with because you're in limbo the whole time, but for me it's also the total lack of information. I was told over the phone by orthopedics I had hydromyelia, that I was being referred to neurology and not to turn my head suddenly! 3mths later the NS told me I had Chiari, wrote down Ann Conroy trust as a support network and said he'd arrange a deeper MRI. 6 mths later I'm being transferred to a different NS.

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    • Posted

      I honestly don't know what to expect from neurology, if they are like the GP it will just be a shrugging of the shoulders. I fell in the snow a few days ago and I have had a sharp spike to my nausea and dizziness as well as a sore bum lol that's life for a chiari sufferer 😕

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  • Posted

    Hi there,

    Yes..you just have to keep patience and persuing..MRI/Scan is needed to find out the mm , pressure etc

    But listen to your body and ask if you can be refered to Dr G Flint at QE hospital Birmngham or even Walton Grange - I heard they are good as well

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