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
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
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
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
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
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
"
Xx
Sorry - really bad predictive text in reply. Sad story was a rant about a spinal cord specialist here.
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?
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
I do too, is your spine specialist in Glasgow?
No he seems to be in North East hospitals. Think he is Indian but very nice.
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.
Perhaps a referral to Newcastle might be my salvation!
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
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'!
Dear Linda, I just wondering if scotland have the like wise system as in the UK , I hope you still are, because if you are , you can report it to PALS or CCG just finding out who is it in your area. On the other hand Mr johnstone and Ms Brown - they are specialist in CHIARI it would be good if you can get them, I live in Dorset but I am going to have 2nd opinion in Birimingham which is 3 hour away from me but he is apparently fantastic, so I am going to have surgery there, I will be seeing him on the 14th of JAN. So, I already made up my mind to have surgery by him, as I heard he is pretty good in fact the best... yes you are right, this website is far better than Ann Conroy Trust..they dont really help at all..ashamed that how people donate some funding ..however it seems that they reluctant to help people like us...so I really promised when I recovered... I am going to set up a support group in my area to help people like. us.they do not know how we feel, each day we feel as we have been hit by a truck, our head being hammered. So Linda..do not give up..but think positive
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
Like wise, I'm here if any of my experience can help in anyway or even just to listen, as my recovery was awful and didn't want to rant on to family, as they were worried sick to start with, I would have loved to connect with people who knew what I was going through.
Hi Linda, I was diagnosed 7 years ago, everything I went through fell on deaf ears, as time went by My symptoms worsened to such an extent I took it into my own hands to find a Chiari specialist to meet with me. I got a new GP, found a specialist & he agreed a referral. I was willing to travel. So I went to The Walton Centre in Liverpool & met with Mr Buxton, an amazing neurosurgeon. I had successful decompression surgery in May.......all is now well......I consider myself very fortunate....
you mention sx, (syrinx ?), ?, your symptoms sound awful, but whether they are Chiari related or not is really up to a Chiari specialist to help you out there! They sound bloody awful though!....I would give up your bikes, take it easy and be willing to travel, it was always at least a 3 hour drive for me, but a small price to pay!
The Walton Centre is a specialist hospital, the best in the country, for Brain & spine, get your GP to do a referral asap!
good luck!