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Mar 05, 2011 - 3 comments












Hmmmm... I have been experiencing so much pain and so many symptoms was told I was a hypochondriac and there is no way I can possibly be in pain everyday and then a diagnosis...I have had so much blood drawn and ct scans and ekgs and still no clue.  Finally and MRI to check for MS and we find Arnold Chiari.  This journey has been a long one and continues to be, I have 3 kids and I am not certain of the outcome of surgery.  I know I need it because my symptoms are getting progressively worse, yesterday I was unable to walk or get off the couch.. Some time before that I was unable to open my eyelids on my own, such weakness and pain is unreal, yet I try to be strong and be normal for my kids and family...On the inside I am quivering and feeling like no one understands so I grin and bear it...My twin brother has been wonderful even though he is a bit bossy he listens to me and supports me and doesn't just say everything will be okay because even if I will it to be okay it doesn't mean it will be.  Just so confused and having an out of body experience and wanting to cry...there is also a positive lupus test I have to deal with my plate runneth over and I am trying my best but not sure of my success...

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by mishell24, Mar 05, 2011
i feel for you and a lot of people on here will too we all are going hrough the same or have been through took so long for me to be diagnosed and was constantly at the doctors or hospital nearly every day...the surgery isnt a guarentee that your symptoms will go away but there is a chance and i took that chance as i could no longer live with the pain or let my children see me that way...i had my surgery november 2010 and everythink went well and i was symptom free until last month when the headaches started and pains in eyes and numbness along with everythink else.. ive been back for a scan and there seems to be some sort of issue where the surgery was done somethinks dropped back waiting for app with surgen next week hopefully...we are here for you i was so scared and came on this site and got a lot of support probly more than what i got of my bf lol...xxxxx

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by selmaS, Mar 05, 2011
Hi...I have had a few positive lupus tests too, but never in a range that warrants treatment....odd I know...not sure if it is a mix up bcuz of the chiari, but it was a retesting for lupus that found my chiari.

It is a bumpy road we travel for this journey with chiari...but, know this....u r  not alone...we r here...lean on us : )

Hang in there ;chin up


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by miz32, Mar 06, 2011
thanks ladies its the strangest thing of feeling alone in a crowded room, then I discovered this website and it was a breath of fresh air...I am still petrified because of the unknown and the more I lose feeling in my arm the scarier it gets and surgery although it could be for the best is somewhat scary....but I will hold my chin up and try my bestest(word used by my kids and I) lol...thanx again..

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