symptoms of arnold chairi

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Hello there i am new to this fourm , i have had chairi for a number of years but suffer from many symptoms am just wondering if anyone else has sufferd the same ,

 

legs giving way and end up collapsing but am concious,

pressure feeling above eyes,

warm weather brings on my symptoms,

spaced out feeling ,

no headaches tho ,

just sense of feeling there odd and not with it like been drunk but not .

docs have given up on me and say if i want the op i could have it but they think it will not help but i can have it if i want , this has been going on years now am total loss of what to do ,

so any help or if people have felt simliar would be nice .

man thanks hannah

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6 Replies

  • Posted

    Have you had an MRI of you whole spine done? Not just your head/neck? Have you been checked for syringomyelia? Also just out of curiosity, any chance you could get checked for MS? The feeling of drunk and legs collapsing is what made me want to ask. Although legs collapsing could also be syringomyelia as well. Anyway, I'm not a doctor. Just thought I would throw that out there.
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  • Posted

    HiHannah

    I've suffered Chiari since 2011 and I've collapsed 5 times now the last being in January this year which lasted much longer than before .

    When I collapse like you I am conscious and all my body shuts down leaving me not able to speak and dribbling , then have a thumping headache more than normal.

    Back in 2012 the neurologist said it may never happen again and the diagnosis was Chiari 1 malformation .

    The weather has never affected me and yes sometimes I do get an ache behind the eyes.

    I do get very dizzy and drunk like and feeling like you are spaced out .

    I'm awaiting to see the neurosurgeon once all the test results have come back to the neurologist, if like you I would jump at the chance to have the OP.

    Talking to very helpful people on this site has confirmed answers to my questions and one was whether the OP can help and be successful . The way I see it is an opportunity to have a chance to lesson the pain or symptoms you're suffering now

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  • Posted

    Hi Hannah

    Sorry about that my shaky hands managed to post before I'd finishes the conversation.

    Do you have a neurologist assigned to your case as they are rely helpful if you state how you are suffering as there are so many symptoms to CM and some bring on other symptoms and lead on in my experience we are all different but have some similarities .

    I hope I have answered some of your questions and please do stick with the fight to get better as it certainly can get you down I find talking to lots of people with the same condition rely helps as they know what your going through do take care Paul.

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  • Posted

    Thankyou for the messages back , i have been seen by a neurol consultant and been seen by a neuro surgen , both are not really intressted in me the neuro consultant signed me off , and the neuro surgen just said if i want the op i can but he dose not think it will work but it is upto me if i want it , am sick of docs not really taking notice of me , have many of the symptoms but because i do not have a sever headache or neck ache which are the two main symptoms they are just not intressted so have learned to live with it and try and cope , it is nice hearing people are suffering the same things as me and it is not al in my head .
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  • Posted

    Hi hannah,

    How long ago were u diagnosed with chiari? R the doctors (neurologists) that u r seeing, r they specialist on chiari?

    If u r having the symptoms that u listed, they r just the beginning, there will be more to follow and the ones u have will get worse.

    Why r these doctors giving up on u and telling u that the decompression will not make u feel any better?

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  • Posted

    Hi Hannah, welcome to the forum...well..its good that you do not feel headache..for me this is the one that  I cNNOT STAND AT ALL..IF i DO NOT SUFFER WITH THIS HARRANDOUS HEADACHE, I will not consider operation at all, each person different..unlless I can not put up with it..my health care professional advice wa to have surgery..forst of all I refused it.but as the dqys went by..my condition getting worse and worse..and finally I have to give up my work..and the headache just unberable..so I have no choice but to take the health care professional advice..how do you feel it your self..do you feel aining at all..I know you feel all of the above..are they discomfort?, are they unberable..are they botherinng you?..is it effecting your quality of life?...can you put up with it?, as each individual different..20% OF patient who done surgery still suffering of their headache..the GOAL OF THE OPERATION is to obtain the less pressure .o that the patient caan have a relieve of their headache (release the pressure) as majority of chiarian got an obstruction - but if you do not have headache..do you really need to think of op?...you really have to think carefully.THE SUCCESSFUL chiarian..normally do not join the group as they are busy with their life..so..what ever you do..consult again with your careless health care professional..makesure they listen to you..their duty is to care about their patient..make them listen to you..you pay them buy contributing your NI..GOOD LUCK
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