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Chiaria Malformation Type 1

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  • Chiaria Malformation Type 1

    I have a friend that was just diagnosed with this. She was having blackouts and having some numbness in her face. She said it was diagnosed as a mild form. Does anyone have any information on this? She said she has to see a neurosurgeon to see what her options are. Has anyone had any experience with this and what can she expect? She is 32 and has 4 young boys. Her husband was just on Mystery Diagnosis for a rare case of Miller Fischer Syndrome. THis family needs some good news. Any information would be helpful.

  • #2
    The first thing I would want to know is if the doctors are sure that her symptoms are due to the Chiari? Has she had a THOROUGH cardiac work-up to be sure the blackouts aren't due to a heart problem, as well as ruling out seizures and other causes. I would be absolutely sure that a good neurologist and general internal medicine or cardiologist has ruled out other causes. Then I would talk to the neurosurgeon. Neurosurgeons sometimes jump right to the surgery they are "told" to do, without being so careful about confirming the source of the problem.

    Chiari's are actually not that rare. A Chiari I is the most mild type. Most people live their whole life without having symptoms. The surgery to try to "treat" this is actually not that complicated and an experienced neurosurgeon should be able to do this with a relatively easy recovery, if she is otherwise healthy.

    Is she being seen at a good place? That is the most important thing. If she was happy with the care her husband got for his neurologic problem, then maybe start with his doctor for a second opinion.

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    • #3
      Here are some good sources of information on this condition:

      http://www.csfinfo.org/

      http://www.conquerchiari.org

      http://defeatchiari.com/

      http://www.wacma.com/

      http://www.ninds.nih.gov/disorders/c...ail_chiari.htm

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      • #4
        Head over to http://www.asap.org

        It is, IMO, the best source of info on das interwebz for Chiari Malformation [CM] and syringomyelia [SM].
        It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

        ~Julius Caesar

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        • #5
          Thank you for the posts and all the information I will forward this to her.

          hlh- Her husband was actually misdiagnosed here. Was told he was having anxiety and stress. The neurosurgeon told him to go to Mayo clinic cause he didnt agree with the diagnosis. He was slowly being paralyzed, double vision and slurred speech. It took mayo a couple days to find what was goin on but treated him quickly and he was left with no effects. So, I think she definately trusts the Neurosurgeon here to give her the correct information. It's a bit scary cause brain tumors seem to run in the family. I have known her since I was 5 so I want to help as much as possible.

          Again thanks for the information and I will be sure to forward it to her.

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          • #6
            Guillain Barre syndrome (Miller Fisher variant) can be very scary. I definitely agree that if the doctors did not handle that properly I wouldn't go back to them. He is very lucky he recovered completely, because some people do not, even when treated properly.

            Could she be seen for a second opinion, before any surgery, at Mayo? What kind of doctor "decided" that it was the Chiari that is the source of the problem?

            What concerns me is that blackouts are not common symptoms for a Chiari I. Since this is her major "bad" symptom, why do the doctors say it is the Chiari that is causing it?

            I have seen people before get the surgery for Chiari when their symptoms were caused by another problem. So I'd hate for her to go through a surgery for nothing.

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            • #7
              She is seeing a neurosurgeon, she didn't say she was having surgery because she hasn't seen him yet. And he will advise whether or not to do surgery or watch it.
              CWO
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


              • #8
                She saw the neurosurgeon. He ordered another MRI. The first one is showing some blockage of CSF, but not a lot. He wants another MRI and then will talk options, and possibley wait another month for another MRI to see how things are going.

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                • #9
                  .......
                  Last edited by thehipcrip; 11-19-2011, 10:22 AM.
                  It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                  ~Julius Caesar

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                  • #10
                    That sounds like a good plan.
                    CWO
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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