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ChiAri 1 Malformation

Posted , 3 users are following.

tammie95397
tammie95397

I was diagnosed with ChiAri back in June...I had all the symptoms but then they stated I had CSF leakage... so they put all the focus on tht...now to tell me 2 Drs later tht they can’t find the leak anywhere & they are not concerned about the low pressure now. ??????? I’m at lost... they stated surgery is nt recommended & this maybe one of those cases that they just can’t figure out. I’m frustrated in pain & seems like I’m getting no relief or any help...bt I’m going broke with dr bills...can someone shed a little light on my issue & maybe recommend something to help me. 

0 likes, 2 replies

2 Replies

  • melanie61979
    melanie61979 tammie95397

    Posted

    Wow hi Tammy! You sound so much like me. I have some questions for you. What was your opening pressure? What are your symptoms? Are they constant? Are your headaches positional? Have they told you how far your chiari is herniated? What testing have you had? How long have you been this way? Well let me start by saying I’m sorry you have to go through this . I completely understand. I have been to many docs and have had many tests. I have been diagnosed with chiari 1 after searching for 10 months to an answer to why I am ill.  Doctors are not very knowledgeable about chiari or csf leaks. So sad because they are disabling. Csf leak can absolutely cause brain sag mimicking Chiari Malformation. Doctors like to say that you can be born with it and it causes no symptoms. Wrong!!!! I also am going broke with tests. Have you saw a neuro surgeon?
  • Apple62
    Apple62 tammie95397

    Posted

    Hi,

    i would go see a neurosurgeon.  What State are u located in?  Also, checkout the Chiari sites on Facebook.  They have some very knowledgeable people out there.

    Sorry, I'm not much help.  I can say the nerve damage can get worse. I'm in the end stage of this adventure.  I'm in bed with pain all over my body.  Please get another opinion.

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