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11-12-2010, 10:24 AM | #1 | ||
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Junior Member
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I was diagnosed with Chiari 1 (1.0 cm herniation) in 2003, and had surgery in 2004. Your symptoms sound very much like what I experienced for many years. It was by accident that my herniation was found. I had a neurological rx to Remicade and had MS type symptoms. I was finally sent to Neurology who did MRI. I definitely believe you need a neurologist instead of just GP to evaluate you. GP's are great but not for complex issues like this. Sometimes you have to get 'firm' with your docs and tell them what you want.And if that doesn't work, you tell them you don't think you are getting their best work and need better care.
Last edited by chiarichic; 11-12-2010 at 10:26 AM. Reason: add title |
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11-16-2010, 04:30 AM | #2 | |||
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Senior Member
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The only way to find out is a MRI .
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11-16-2010, 10:41 AM | #3 | |||
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Senior Member
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here are a list of symptoms
http://chiarione.org/symptoms.html
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Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile |
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11-22-2010, 11:48 AM | #4 | ||
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New Member
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thanks guys.
well i got my ct scan results from gp today. which say there is significant lessions to the fourth ventricle(don't know what that means)but the most important part is severe crowding in the forearm magnum consistant with arnold chiari malformationtype 1, please follow up with an mri. so now after many yeras the gp is finally listening to me and is ordering an mri of neck and spine. the gp is pretty sure an mri will confirm the ct scan but to what degree of the herniatrion remains to be seen, also checking for syrinx and tethered cord? take care |
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11-22-2010, 04:04 PM | #5 | ||
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Junior Member
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Quote:
On Oct. 5th of this year I went to see Dr. Green in Miami. I was so hopeful that I would finally have resolution of some kind once I saw him. They did a CINE MRI and I felt horrible during the test. When I saw him for the follow up on Oct. 6th I was told that I do have Chiari 1 and also major neck issues. He told me that he didn't think it was the Chiari that was causing my symptoms, but he thought it was my neck. He ordered 6 weeks of physical therapy and to follow up with a pain management doc. I have medicaid and found that Medicaid does not cover physical therapy or pain management. I continue to have debilitating headaches and seizures. I don't know how much longer I can live like this. I don't understand why Dr. Green would not do the surgery, as I have a 5mm herniation on the right as well as a 4mm herniation on the left side. I thought he was highly recommened but was deeply dissapointed when basically nothing was done. When I told the doctor that I only had medicaid I was told that it was "pretty much impossible to find a physical therapist that takes Medicaid. When I asked what I should do, he simply shrugged his shoulders. Do you have any thoughts or recommendations? Thanks so much and God Bless. |
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06-19-2011, 01:53 PM | #6 | ||
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Junior Member
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I had to have a vp shunt due to hydrocephalus caused by Chiari I malformation. I have had 8 shunt surgeries since it was 1st placed in 11/2010.
I was diagnosed with Chiari I malformation after a MRI showed the condition. Also diagnosed with Arnold's Chiari which means that my spinal fluid was not leaving my head. I was 48 years old when diagnosed after having headaches and eventually passing out when ever I coughed, sneezed, gagged, or vomited. The shunt did relieve the pressure in my head but did not help with the pain when sneezing, coughing, etc. I had Chiari Decompression surgery in 2/2011 and that corrected the above problems noted. Chiari is hard to diagnose even with a MRI. After being told originally by a neurologist that my problem was a pinched nerve and later after I started passing out that it was not neurological I returned to my Family Physician and HE listened to me! He ordered another MRI and the radiologist diagnosed Chiari I malformation. I was then referred to another neurosurgeon that verified the Chiari and immediately inserted the VP shunt. The 8 shunt surgeries included the insertion, revisions, and 19 days in hospital with infection in my brain due to the tube in by abdomen becoming coiled and not allowing the fluid to flow. After all this and still having Chiari symptons, I decided to have the Chiari Decompression (9th surgery) and I am doing alot better. Just praying the shunt does not malfunction in any way. I recomment Dr. Daniel Barrow @ Emory Hospital in Atlanta, GA. I am not sure if he takes your insurance but it is worth a try to give him a call. |
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06-19-2011, 04:28 PM | #7 | ||
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Junior Member
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I have heard that physical therapy can do more harm than good if you have Chiari I malformation. My neurosurgeon recommended the same after I had 8 VP shunt surgeries. I declined and found a neurosurgeon at Emory Hospital in Atlanta, GA that felt I needed the Chiari Decompression surgery immediately. I had the surgery and it has relieved most of my lingering Chiari symptons. However, neither of my neurolgist in Augusta, GA or Atlanta, Ga have agreed that physical therapy could make it worse. But it makes sense to me since you brain is pushing through the base of your skull, any type of exercises and/or movement could make it worse prior to having the Chiari Decompression.
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