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Old 10-25-2010, 07:41 PM #1
misysme misysme is offline
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Location: Nebraska
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misysme misysme is offline
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Join Date: Oct 2010
Location: Nebraska
Posts: 10
10 yr Member
Default Confused about the syrinx

Hello everyone, I'm a newbie so please bear with me. I have been disabled with fibromyalgia since about 1995. In July 2009 I was diagnosed with Chiari Malformation with a syrinx. The cerebellar tonsils extended 14mm. The syrinx was 7mm x 9mm x 55mm extending from C1-C4. When I went to see the neurosurgeon he said the decompression surgery was necessary to collapse the syrinx. He said that if I did not get the surgery that I would eventually become paralyzed. I had the surgery in August 2009. I had an MRI done in October 2009 and it says the syrinx has greatest AP dimension of 5.5mm and greatest craniocaudal dimension of 35mm. The last MRI was done in July 2010 and says the syrinx measures 7mm x 10mm x 36mm. The last MRI was done because I am recently having pain and numbness in my left leg and left arm. Here is my question...If the purpose of the surgery was to reduce the syrinx, then why is no one concerned with the syrinx that I STILL have? Also, before the surgery, the doctor said that I should not lift heavy things or bear down because of the syrinx...do I still need to abide by these limitations? I'm just not sure if I should still be persuing these issues or just accept them.
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Old 10-27-2010, 11:36 PM #2
chiarichic chiarichic is offline
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From one Chairian to another, if you feel like the issue is concerning, it probably needs to be addressed. Remember you probably lived with this for a long time before diagnosis so have learned to live with a certain amount of discomfort. On a scale of 1-10, your 5 is probably a non-Chiari patient's 10.Call your dr. and insist that they see you and discuss your concerns: keep a journal of symptoms and pain levels until you get in to see dr. Write down all questions and camp out until you get the answers you need. Your dr. works for you.
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