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  • Chiari? Does anyone know? Is there really such thing as a Specialist?

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    Old 01-29-2010, 01:00 PM   #1
    ShannonRenee76's Avatar
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    Chiari? Does anyone know? Is there really such thing as a Specialist?


    I am a Mother of Five Children and I was diagnosed with Chiari I back in 2006. I went to see a Neurologist after years of Headaches. I went to see hime because the PCP prescribed Topamax for the headaches and kept increasing the dosage until I had a TIA. I went in to the Nuerologist and was told I was going to get and MRI. I have had several through out my life. I had several open MRI's that is. This MRI was different it was a closed MRI. I returned to find out that I had Chiari and he did not really have any info about the disease. He then told me that he would refer me to a Neurosurgeon. I went toa couple or Surgeons including Dr. Oro while he was here in Columbia, MO. I did not have obstructed CfS Flow and the herniation was only 6mm. I was told that I sould wait on the surgery..Well lets skip forward to now. I have had chronic pain for years, ADHD and Fibromyalgia now along with dizziness, headaches numbness, pin and needles and just not feeling well. I go in to my PCP and she is great! She says lets get another MRI and CFS FLow and lets get an Mri of the whole spine (due to severe spinal pain I had). Insurance would only pay for Brain, CFS FLOW and Cervical. The L & T spine were not included. I now am told that I only have a 4mm herniation and I now have Moderate CFS FLow Obstruction. I spoke to a Nurse that wrote a book with a well known (CHIARI SPECIALIST) and she said that I my not even have Chiari and wanted to know if I had checked all other possible reasons. I now get really shakey upon standing. I am so frustrated. I guess I depended on the Doctors to have the answers. Can anyone help me? I just do not understand how a disease that has caused damage to so many peoples lives can not be explained. I am going to see the Surgeon on the 1st of Feb. I am scared to have the Surgery but, I cannot stand the pain any longer.
    Shannon Rene'e

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    Old 01-31-2010, 02:27 AM   #2
    klinkdog1's Avatar
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    Re: Chiari? Does anyone know? Is there really such thing as a Specialist?

    yes there are many specialist

    Old 02-02-2010, 11:50 AM   #3
    FLMOM413's Avatar
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    Re: Chiari? Does anyone know? Is there really such thing as a Specialist?

    Hi Shannon,

    4yrs ago my mom was diagnosed with Chiari 1 malformation and I can fully understand where you are coming from. She lived with the symptoms that you described until a neurosurgeon in West Palm Beach, was able to make the diagnosis of Chiari. We thought the initial operation was the answer and she would return to normal, it in fact made her symptoms worse and almost unbearable. The same DR then preformed a disk surgery in her neck and again her lifstyle failed to improve. She decided to no longer continue with that Surgeon.

    2yrs later, and several trips to different Dr's in the United States my mom found Dr. Henderson in Baltimore Maryland. The intial surgeries in Florida, were not what she needed as she was also diagnosed by Dr. Henderson, with a connective tissue disorder. In December, my mom went to Blatimore for her 3rd operation. It is now 6 weeks out from the surgery and I the only thing I can tell you is that I have my mom back and she has herself back. She has her color back, the "tingle" sentsations are gone, no more ringing in the ears. She is on the road to recvoery finally.

    I just want you to know there is hope, but you do need to really get a feel for the DR you are going to....some questions to the Dr would be are you familiar with EDS(connective tissue disorder)? 1 in 15 patients with Chiari have EDS. How many surgeries? Success Rate?

    I have never reached out on a forum, but was researching some information and your post caught my eye. I have spent the last 4 yrs watching my mothers life fall apart around her...she had been told by Drs that she was depressed or was imagining these symptoms....she was not, and neither are you.

    I am sure there is a lot of information my mom would be more than happy to help with.

    Best Wishes

    Last edited by moderator2; 02-02-2010 at 12:10 PM. Reason: posted contact info - please read the posting rules

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