Chiari Malformation Community
is anyone else as frustrated?
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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is anyone else as frustrated?

i woke up for the first time in 3 months without a raging migrain. it was a manageable headache. the first 6/10 ive had in months. its not even 1:30pm and my had wants to explode. easily a 7.5 close to an 8. my hands are shaking so bad today and are so extremely weak today i can barely type. and i feel like spiders are crawling all over my arms and hands. other than that i have the normal stiff neck and shoulders, my head exploding with pain when i cough, sneeze, and laugh, i feel nauseas, and i feel way more tired than usual and my legs feel like they are going to collapse under me at any given moment. im just so fed up with the struggle you know? i never thought in my life that i would be PRAYING for brain surgery just to get a relief from the constant pain!
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620923_tn?1405964489

  I hate to say u r not alone in this, but u r not...we all get frustrated and feel just the same....it is frustrating as there r not enuff Drs well informed or experienced to offer us help.

But they r out there...Have u read the Poem by Dr Oro? Look at the top of the  page and look the Important Announcement drop down, and Click on the poem....it helps when we r frustrated to read about a Dr that understands as it helps to offer hope : )
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Avatar_f_tn
I wish that I could say something encouraging besides you are not alone.
This condition is a very heavy burden, and continues to be even after surgery (although usually lessened).
Try to find some gratitude, enjoyment, and/or support wherever you can.  Easier said than done, I know.
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4223560_tn?1355529550
i have suffered the same pains for years and i wanted the same a operation as u just to stop the pain in my head i have the worse migrains ever for 30 years iam now 45 and i still suffer i go to the chronic pain unit get injections in my head , neck and throat everything months iam all , all sorts of things and nothing works i got a c,t scan an m.r.i scan it showed i had a trap nerve in my neck and a retention  mucus cycst in my head but they r not doing anything ab out it x
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

Do u think u may also have Chiari? From reading ur post I can not tell if u have a DX....that is really leading to relief.

  Have u tried PT?
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1306714_tn?1327260680
So sorry to hear your feeling this way.  I know I felt the same way before surgery.  It's no way to live, but I never thought after surgery I would have to accept the things I can no longer do because of Chairi.  Wishing you a better day tomorrow.  
Linda :)
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