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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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  • b2wc97455
    b2wc97455 linda24133

    Posted

    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
    • helen11122
      helen11122 b2wc97455

      Posted

      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.
  • hayleybell
    hayleybell linda24133

    Posted

    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!

    • linda24133
      linda24133 hayleybell

      Posted

      Thanks Hayley. I asked the GP to refer me to the Walton centre - categorically refused, hence my plea for help/contacts in Edinburgh. It's all tad mental - no pun intended🤕
    • hayleybell
      hayleybell linda24133

      Posted

      Linda, I would suggest you see another GP! What is there opinion as to why you are having these symptoms?

      Also, I forgot to mention that many Chiari sufferers have 'incidental finding' on their MRI's.....the trouble is some patients can have a small tonsillar descent and severe symptoms, where as some much larger tonsillar herniations can be without symptoms all together. It can affect people in many different ways. My NS said that it can depend greatly what shape skull & neck you have along with symptoms rather than the actual size of herniation.

      when I was in hospital having my op, there were 4 other women on my ward with Chiari, (one from Scotland actually) and we all had very different stories to tell....and all recovered differently!

      I reckon that if you find another GP in your area, if not a neurologist, and request an urgent referral otherwise, you may have to see if you can do it yourself. I know it is important they have a s much info as possible, especially the hospital which you had any previous MRI's of brain and spine.

      hope this helps a tad.... 🤕

       

    • helen11122
      helen11122 hayleybell

      Posted

      You are so right hayley, the operation is to prevent symptoms getting worse it does not cure it. So sooner your getting sorted the better. X
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