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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
helen11122 linda24133
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linda24133 helen11122
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jennacyde linda24133
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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 jennacyde
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linda24133 jennacyde
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helen11122 linda24133
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linda24133 helen11122
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helen11122 linda24133
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linda24133 helen11122
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helen11122 linda24133
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clarey1 linda24133
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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 clarey1
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linda24133 clarey1
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linda24133 clarey1
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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 linda24133
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helen11122 clarey1
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