My chairi type 1 story - 4 weeks since I found out.

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Hi all,

What a relief to find this group smile

A little about me. 4 weeks ago I had extreme neck pain and back of head pain for three days - I put this down to stress but in the end went to hospital, they kept saying its a migraine but the initial nurse pressed the doctors to run a CT scan and then they found I had a chairi type 1. The following day I had a MRI scan that showed a slight issue at the top of my spine. I have was keep in hospital for a week for obs as they initially thought I had bust blood vessels in my neck. I was discharged 3 days before Christmas and going for another CT scan next month and a follow up in March. I have had pains most days in my neck partly stress from work but sure the pains are also because of the chairi. I am so stressed out I try to keep calm but its on my mind 247.     Do things get easier in time once you get over the shock?  I am so scared I will need surgery. Look forward to reading and joining in on the group.  Dan

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  • Posted

    Half the battle is knowing what you've got. Not knowing causes stress, on top of your other stress. Try to relax as much as possible, easier said than done. They have diagnosed so they can deal with it. It affects different people in different ways as you will read on this site. Relax Iknow its hard but it does help. Good luck to you, hope everything goes well.
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    • Posted

      As I have said I am disabled now only survived because of my wife and farther, I had a brain hemmorrage which paralysed me down the right , it takes me ages with my left arm now , I caught diabetes as well now and have to take 4 injections a day and blood but that isn't the only thing , I write a story ok - 1st collapsed in asda shopping was taken to hospital 12 hours later on a hospital trolley out cold my feet was turning blue and my farther at the time said if nothing is done right now to the nurse at the time I kill you if anything happens , luckily a male doctor was walking passed and said let me have a look and said I was serious and transferred me to Royal London hospital where they done a ct scan and a brain heammorrage operation , they said you will have to prey that I wake up , which I did three weeks later , I couldn't walk , talk or anything , to cut a long story short it paralysed me , I went through so much ops inc pulse cut out because got infected to radiotherapy to the brain etc etc then collapsing again and finding out I got diabetes , my wife has been through so much at the age of 25 I don't know what I would have done without her and looking after my son who was 1 at that time . So I would say get the operation done as soon as you can because the longer you leave it you could be like me . I am 44 now and everyday is a struggle but thx my wife for everything she had and does do . Anilkumar
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  • Posted

    As I have said I am disabled now only survived because of my wife and farther, I had a brain hemmorrage which paralysed me down the right , it takes me ages with my left arm now , I caught diabetes as well now and have to take 4 injections a day and blood but that isn't the only thing , I write a story ok - 1st collapsed in asda shopping was taken to hospital 12 hours later on a hospital trolley out cold my feet was turning blue and my farther at the time said if nothing is done right now to the nurse at the time I kill you if anything happens , luckily a male doctor was walking passed and said let me have a look and said I was serious and transferred me to Royal London hospital where they done a ct scan and a brain heammorrage operation , they said you will have to prey that I wake up , which I did three weeks later , I couldn't walk , talk or anything , to cut a long story short it paralysed me , I went through so much ops inc pulse cut out because got infected to radiotherapy to the brain etc etc then collapsing again and finding out I got diabetes , my wife has been through so much at the age of 25 I don't know what I would have done without her and looking after my son who was 1 at that time . So I would say get the operation done as soon as you can because the longer you leave it you could be like me . I am 44 now and everyday is a struggle but thx my wife for everything she had and does do . Anilkumar
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  • Posted

    Hey Dan

    Positivity is always the key to these kinds of situations. I think you have probably been quite fortunate to have had a diagnosis so quickly!

    I was diagnosed 7years ago after a battle to be taken seriously with my symptoms. My experience is many CM sufferers spend years hoping to be heard, which of course then adds to the stress of it all.

    I did indeed need the op, (not everyone does, so rest assured )which I had 8 months ago, I am recovering really well and am now symptom free.

    It sounds like you have support from your doctors caring from you.

    Certain things can trigger symptoms to worsen, esp stress, so try, if you can, to relax more.....

    Hope I have helped.

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  • Posted

    Hi Dan, you have got a good support here from yelt and hayley, like they said aat least you have been diagnosed, get the op soon before it get worse, be calm, look after yourself, take it easier, get your neurologist to refer you to the good neurosurgeon who has done lots of chiari surgery talk to organisation such as ann conroy trust read on the web about our condition,,,you have started with this site..so you have doe the right thing.so take it step by step..just accept it our condition and managing it righthly and calmly
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  • Posted

    Hi Dan, I am also recently diagnosed (december). My where about are you ? and what type of tests have you had so far ?

    I would definately recommend you push for a CSF Flow study MRI if you have not already had one as from what I can understand this would indicate if you have any flow restrictions.

    This group has been very helpful in answering my many questions and giving great advice

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    • Posted

       

      ​You have to keep a senseof humour somehow though. Thank heavens for that or else we'd all go bonkers.

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    • Posted

      Oh yes ! I do enjoy the look on people's face when I tell them my brain is too big for my head 😂😂
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