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Scotland UK help

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linda24133
linda24133

Hi. I've had "incidental" finding on MRI after 3 yrs of hell re symptoms post severe bicycle accident. Really flared this summer after another bike writeoff after dooring accident. All sx I've had before MRI match Chiari, GP dismisses me despite MRI, Physio dismisses me, neurology said I've no sx as GP, Physio & each specialist can't communicate in our modern world of technology. I'm now back to snakes & ladders game again. Does anyone live in Edinburgh Scotland and know where to get a human in the NHS who can look at all my sx and deals with Chiari. I've tried numerous times leaving messages on voicemail with Ann Conway trust but no answer. If there's a GP/Neurology person out there in cyberspace I would appreciate someone who can advice how/where/what to do. My worst sx are the manic sensitivity to sound/choking when bad that starts as difficulty breathing/jellyfish in head moving feeling which is nauseating/unable to lie down for neck pain/deep diving pressure in head/constant flicking eye/really loud thunder in ear/leg that is so weak it gives way/freezing freezing hands feet bum nose/mental cracking grinding "rice crispy" noise in neck with extreme pain/the ice cream cone twisted feeling in my head that stops me being able to turn my neck to look over my shoulder/excruciating pain over L1/2 ....sorry said I'd say the worst but this is just a tad. I'm alone so the choking is the worrying one/it also slows heart right down - pulses to 30 just before I end up on floor almost blacking out. Oh, add peeing in pants just to make life more fun. My GP tells me that none of it could be related - asked if she know condition or has treated someone & get "I'm a general GP". Sad, 3 years telling dead folk what's wrong - get an answer and they even more deaf. Please help. I'm delinquent at technology so no sure how this all works so a 2 year old guide in how to see if there's an answer would help. Almost had a meltdown figuring out a password. Bad day - eyes flicking, thunder in ear, legs twitching, backs spamming & neck grinding. Oh vey

4 likes, 22 replies

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  • helen11122
    helen11122 linda24133

    Posted

    Hi linda, it took 7yrs for someone to notice my chiari malformation, and it was a spinal specialist in a Newcastle hospital who sent me for mri on spine, and did head too incase problem came from my neck. He picked up on it and sent me to neurosurgeon. I have seen number of neurologists over the yrs but I was lucky to get this consultant. My sister has ms and it took 2yr for her to be diagnosed too. I do hope you get someone in Scotland to sort you out. A lady from borders of Scotland was in the rvi in Newcastle having an operation on pituary gland when I was in, so I'm hoping you won't have to come that far for answers. My heart goes out to you as it's awful being in limbo and getting no further forward. X
  • jennacyde
    jennacyde linda24133

    Posted

    Not sure if they will delete this info, but this is a list of recommended doctors familiar with Chiari.

    UK

    Mr Richard Ashpole 

    Queens Medical Centre 

    Nottingham 

    Mr R D E Battersby 

    Royal Hallamshire Hospital 

    Sheffield 

    S10 2JF 

    (Manchester) Burkhari

    Mr Thomas Carroll 

    Royal Hallamshire Hospital 

    Sheffield 

    S10 2JF 

    Mr Munchi S Choksey 

    Coventry & Warwickshire University Hospital 

    Coventry 

    CV2 2DX 

    Mr Graham Flint 

    Queen Elizabeth Hospital 

    Birmingham 

    B15 2TH 

    Mr Carl Hardwidge 

    Hurstwood Park Neurological Centre 

    Haywards Heath 

    RM17 7SP 

    Mr Sid Marks 

    The James Cook University Hospital 

    Middlesborough 

    TS4 3BW 

    Mr R Johnston 

    Southern General Hospital 

    Glasgow 

    G51 4TF 

    Ms Jennifer Brown 

    Southern General Hospital 

    Glasgow 

    G51 4TF 

    Mr John Gray FRCS 

    The Royal Victoria Hospital 

    Grosvenor Road 

    Belfast 

    BT12 6BA 

    Mr David Mowle FRCS 

    Ninewells Hospital and Medical School 

    Dundee 

    DD1 9SY 

    Mr Dominic Thompson FRCS 

    Paediatric 

    Great Ormond Street, London 

    Mr Rodney Laing MD FRCS (SN) 

    Cambridge University NHS Trust 

    Cambridge 

    CB2 0QQ 

    Mr Tim Pigott 

    The Walton Centre for Neurology 

    and Neurosurgery 

    Liverpool 

    L9 7LJ 

    Mr Bob Redfern 

    Morriston Hospital 

    Swansea 

    SA6 6NL 

    Professor J Van Dellen 

    Charing Cross Hospital 

    London 

    W6 8RF 

    Mr Richard Selway 

    Kings College Hospital 

    Denmark Hill 

    London 

    SE5 9RS 

    Mr Richard Cowie 

    Greater Manchester Neurosciences Centre 

    Salford Royal Hospitals 

    Mr Richard Ashpole 

    Queens Medical Centre 

    Nottingham 

    Mr Barrie White 

    Queens Medical Centre 

    Nottingham 

    Mr Conor Mallucci 

    The Walton Centre for Neurology and Neurosurgery 

    Liverpool 

    L9 7LJ 

    Mr Bruce Mathew 

    Hull Royal Infirmary 

    Hull 

    Mr Andrew Broadbelt FRCS 

    The Walton Centre for Neurology and Neurosurgery 

    Liverpool 

    L9 7LF 

    Mr Nick Haden 

    Derriford Hospital 

    Plymouth 

    David Allcutt FRCS 

    Consultant Neurosurgeon 

    Beaumont Hospital 

    Dubli

    • linda24133
      linda24133 jennacyde

      Posted

      Thanks. I've asked GP to refer to the Dundee or Glasgow guy but categorically was told she can't refer outside juristriction of Edinburgh. So referral to general neurology in Edinburgh. That was where I was hoping if someone has see a "human" in Edinburgh or just a dead end. My other bit I left off was seeing the "spinal specialist " via the Physio after insisting for a year that something in my back & neck was affecting my left leg that's wonky. Told her I'd found out of this & also of pineal cyst - thought great as I'd get referred. Nup, got again categorically told there's nothing wrong & your brain not protruding. Me, scratch head. Nup - it's just a cyst on the bottom of your brain, it's not protruding. Me, really scratch head. I've 2 cysts then, I only got told of the one on the pineal? No, definitely NOTHING wrong with your brain. Me, now getting tad peed off tell her it's reported at 6mm herniation. No, it's NOT she says pointing to her yellow post it note. The note reads "pineal cyst with cerebellar tonsils". I was so amazed that a spinal specialist could actually say & do this. I the categorically told her that a pineal cyct refers to the pineal gland, a completely separate stupructure in the brain to the cerebellum. A pineal cyct refers to the lines, grand. They had a look at MRI, really clear herniation, then looked at report. "Small pineal cyct found. Right cerebellar herniation 6mm". NOTHING wrong with that wording to a non spinal specialist. I've been told to report this, but where to put energy is my priority. I'm still waiting for the call back after requesting exclusion of syrinx/tethered cord or other non related disk/nerve issue via MRI of entire spine in light of unrelenting back issues & new Chiari. Wild guess that it's 2 months now & still no return call after leaving 3 messages & to,d I'd get a call back in 2 weeks after getting neurologist dealing with Chiari to have a look. Hey ho 

      " 

    • linda24133
      linda24133 jennacyde

      Posted

      Sorry - really bad predictive text in reply. Sad story was a rant about a spinal cord specialist here. 
    • helen11122
      helen11122 linda24133

      Posted

      It's all wrong your having to chase this up. Makes my blood boil. It was spine specialist that wrote to my Dr and a neurosurgeon that I had a chiari, I'm actually seeing same specialist for bulging disc in back, when I told him he diagnosed my chiari even he said yes you get told, oh it's this and that! And he said it was probably missed ! I do hope you get something sorted soon x
    • helen11122
      helen11122 linda24133

      Posted

      No he seems to be in North East hospitals. Think he is Indian but very nice.
    • helen11122
      helen11122 linda24133

      Posted

      He was the one that discovered it then I had a neurosurgeon called Mr ross but he went off sick. So had a Mr ozo majors who did operation. I don't think he is very clued up on the recovery side of things though. But specialist nurse at rvi was good. X
  • clarey1
    clarey1 linda24133

    Posted

    Hi,

    I only managed to get anywhere at all with it all by paying for a private consultation with Mr Taylor who will be doing my decompression surgery next week at The Southern Neurology department in Glasgow. Unless they cancel it again. I know it's not fair to have to pay to get the help, but I was messed around by a clueless neurologist who basically told me that I was imagining it all!

    Having said that, I was told that I needed, and put on the list for surgery in May and have waited all this time, getting more and more ill.

    Good luck and I'm more than happy to help in anyway I can.

    Clare x

    • helen11122
      helen11122 clarey1

      Posted

      Good luck with your operation. I had decompression over a 1yr ago. I had it in Newcastle rvi. I had few issues after, speech was slurred and couldn't eat lumpy food but it was the nerves and after a week I was fine in that department . But i was ill with dizziness and nausea till my body adjusted to different pressure in head. Everyone I've spoke to recovers different. I had very good nurse on the end of phone for any concerns. Good luck hun x
    • linda24133
      linda24133 clarey1

      Posted

      Thanks Clare, I've still got the "peed off" in me for my fight to be seen by a specialist and no more c....p from some mental "spinal cord" specialist that doesn't know the difference between the pineal gland and cerebellum and doesn't have the time of day to read an MRI report. May I ask if you don't mind if you are in Edinburgh or Glasgow ?  Also were you heard by mr Taylor? 
    • linda24133
      linda24133 clarey1

      Posted

      Oh, been doing a me-me-me thing realising I've been heard for the first time in 3years & totally not connected to your op. Sorry for the rudeness - call it Chiari induced!!! Make a speedy recovery & I'll be watching your progress with real interest as you're the closest person to me.  so please pop a note from time to time, I'd love to hear your experiences 

      I'm still convinced my "ice cream head" feeling of the twist since the bike accident is going to untwist & surgery won't be necessary. Perhaps foolish considering sx of the choking, but that's in my "head" (he he) as Nhs to date won't even acknowledge it. 

  • clarey1
    clarey1 linda24133

    Posted

    Thank you Linda and Helen for your kind wishes! I'm dreading the surgery, but I'm dreading them cancelling it again even more! I'm in Glasgow. I found Mr Taylor through getting recommendations from my GP staff and then just phoning around hospitals asking who was the best ' chiari man'!
    • helen11122
      helen11122 clarey1

      Posted

      Nothing worse when your all built up for it, I waited 6month longer due to my 1st consultant having an accident. But don't hesitate to ask anything and will try to help. I know what it's like and some get over op well. Unfortunately it took me 3months to get back on my feet. Sounds like your in good hands. X
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