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Help need please Chiari Malformation type 1

Posted , 3 users are following.

erin_60546
erin_60546

Has anyone else had this problem? I have had three MRI's 2 showed the chiari at 4 mm, and then I had the CSF study and it doesn't show that I have it. I have all the symptoms and no relief. The worst is the migraines and fatigue with my arms going numb all the time. Please help what do I do. The last MRI and csf with the same neurosurgeon.

0 likes, 3 replies

3 Replies

  • janna97990
    janna97990 erin_60546

    Posted

    Hi Erin.. sorry to here you're having a horrible time with you're diagnosis. It took me two years worth of assessments to neurologist and N/S that didn't take my symtoms seriously.(where are you from? UK or US or??) I felt deflated. Anyhow. From my own research I figured out that a chiari specialist was the key. I'm now awaiting another appointment for pre surgery arrangements. However risks and outcome may not be 100%symtom free. It's a long process but do keep fighting. After all you know you're body best. It's hard to cope with daily for me . Know medication or treatment seems to be working.. I've requested a cine scan but my neurosurgeon said it's kinda pointless as pressure builds depending on symtoms and headaches ect. Do you get headaches Erin? If you're from the UK check the Ann conroy sight with a list of chiari specialist that you could get you're local gp to refer you to. Hope this helps. TC Janna smile

    • erin_60546
      erin_60546 janna97990

      Posted

      I went to a chiari specialist and she is the one that gave me two different answers. I am,in the US. I finally got the botox approved for my headaches but they are so backed up it's not until August 23 I get the first dose. I don't know what to do? I can't work because my migraines are so severe I have over 25 per month. I just don't know what to do? How can you get two the same and one different?

  • b2wc97455
    b2wc97455 erin_60546

    Posted

    Hi erin, the symptoms seems that you have Chiari, Iwas like that prrior to my surgery, I am now on the 7th month, I still feel back pain and occasional headache if I do too much..but I am drug free not even paracetmol and I started to get my life back - but I still be careful and take it easy ..it takes at least 18 months to be recovered - but I knkow I will not be able to do lots of exercise that I used to do..yoga is best.

    Go and get 2nd opinon - in my opinion surgery is best, the longer you leave it the worse it can be..

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