Chiari Malformation Community
Curious about Chiari
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Curious about Chiari

Hello everyone!! I am new to this page and was wondering if I could get some clarification about chiari? I myself do not suffer from it, but I do have a relative who says she has it. I am just trying to understand some of the symptoms a bit better and what someone with this might be going through! My first question would be does this cause nerve damage? Can someone be diagnosed this at the age of 50? Does it cause migraines and dizziness? Does it affect you psychologically? I hope someone out there will be able to help me out! Thank you in advance.
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Thank you for reaching out to understand and help your friend.  I am 50 and was diagnosed with chiari and tethered cord in December.  While I suspected something else was going on (had cervical fusions 10 years ago), I didn't know what it could be until 3family members were diagnosed with chiari in the last few years.  Very often we go undiagnosed for a long time after symptoms appear because it is so rare and complex.  I have not had the decompression surgery yet so I can't say that I have permanent nerve damage, but that is a concern.  Drs. recommend you wait to have the surgery until the benefits outweigh the risks.  Yes, chiarians do have migraines and dizziness.  I have had a severe headache for 3 days now.  I never completely goes away, but becomes quite severe at times for great lengths of time.  Everyone's symptoms can be different.  I had minor spells of dizziness, but have non-stop nerve pain throughout my limbs and frequent nausea.  I do believe it has a psychological effect because its always there with you ... Reminding you you're il, feeling sick, tired, in pain.  There are several others here who have dealt with it longer than I, and I am sure they will share similar stories.  You're a good friend to show such concern.  Assure your friend that you care and BELIEVE him/her, and that will mean the world to them.
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Thank you so much for your insight! This is very hard on my family. My biggest struggle is that every MRI, CT scan and test that comes back there is absolutely no nerve damage anywhere. It's such a complex disease that I don't understand. I have asked queations because this family member has self diagnosed herself in the past and caused out family much grief. She is very angry and attention seaking and I am trying to understand what is truly going on.  She has a history if mental health issues so I am trying to get all the facts straight about chiari. Bit thank you again!!
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I will do my best to answer all of your questions :)

Yes, Chiari can cause permanent nerve damage, but does not always do so. I am not sure what you mean by the scans show no nerve damage. Chiari is when the cerebral tonsils herniate past the foramen magnum. There will normally be a number associated with this, for instance 6 mm.

I am young, but I have heard of MANY posters on here and elsewhere that were diagnosed at 50 or older, it does not seem to be that uncommon.

Migraine like headaches that occur in the back of the head and are made worse by sneezing, coughing, crying, lifting heavy objects or otherwise straining is one of the most common symptoms of chiari. Dizziness is also a symptom many people with chiari suffer from.

What do you mean by affecting psychologically? It is associated with anxiety for sure, but I would like some clarification on other ways it affects us :)

I am so sorry that this family member also has to deal with mental health issues, but try to be patient with her. Chiari is something that is notoriously hard to diagnose. Many of us struggle for years and I have had multiple doctors tell me that I am making it all up or that it is all in my head. If you have any other questions please ask!

Sara
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I see Sara has answered many of ur questions....

If ur family member has a syrinx it is possible to develop nerve damage....and  it can also depend on how  long a compression of the nerves have been going on. We can also develop never damage as a result of a never being cut during surgery too.

And to add to the age issue, I was 48 when dx'd.... for so many of us we had symptoms our whole life, but MRI's were not available for us to get a Dx....and many of us have been to sooooooo many Drs...and many telling us we had depression or anxiety issues...all with no real testing....we get push from one Dr to the next and none have a clue....

Since Chiari affects our spinal cord where all the nerves pass thru, all aspects of how  we feel, react and are depend on how healthy those nerves are, that is our body's control center...so we may have depression but it is usually from Drs not listening and being in chronic pain with no answers.

Has ur family member had surgery?...found a true Chiari specialist?

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