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04-14-2008, 11:13 AM | #1 | ||
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About a two years ago I was getting really dizzy and sometimes falling down. After I went through checking out me ears and other possible problems, my doctor sent me for a MRI. It showed the Chiari Malformation. Like alot of ya'll, I have had many scans because I have a seizure disorder and have never been told I had this condition before. My NL claimed that the dizziness was due to the "5 MM" Chiari Malformation. For about a year before finding the Chairi Malformation my Left hand would become paralyzed. It was always blammed on the seizure disorder that was under control. About six months after the test I started having pain in my left leg. It is best decribed as nerve pain and weekness. My leg and feet would fall asleep alot. I could be standing or walking and they would fall asleep. I started having pressure in my ears and having trouble hearing (like I was on top of a mountian). When I cough I get a brain freeze. Now I am starting to have problems with my sight. I still can see, just have problems at times. My doctor sent me for another MRI and the Chiari Malformation was 8mm. I wanted to know how if this is part of the Arnold Chiari Malformation or something else. How many people with this condition have the some problems?
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04-14-2008, 12:19 PM | #2 | ||
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Hey, Jen.
I'm finding out that just about any symptoms are possible with Chiari. Here's a good list: http://www.chiarione.org/symptoms.html LIZARD |
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04-19-2008, 03:38 PM | #3 | |||
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Yeah, it affects just about anything and everything, hon. Before I was Dx'd, I felt like a hypochondriac. One day something would hurt, another day something would be numb, and God Forbid I sneeze or hiccup, cause then the world would do loop de loops, and no telling where I'd wind up in the process.
Yeah, I had issues with my legs and feet as well as my arms, shoulders, back and hands and fingers. So your not alone. God Bless you!!!! Dawn
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09-01-2008, 01:41 AM | #4 | ||
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I know it's very strange. I had (and still have) such an odd array of symptoms. One day everything would be fine and the next it would be a struggle to walk, my hands would decide to stop holding a glass and drop to the floor, I'd drop to the floor, the pressure in my ears would be immense and the pain would almost always be unreal and unbearable! While the surgery is not a cure all it can help aleviate some of the symptoms and for some all the symptoms. My strange thing is before surgery I did NOT have headaches. But after I developed intercranial pressure and the headaches persisted. The Periteneil shunt has helps but it tood awhile. It's all so hard to understand let alone live with. Hang in there! My thoughts and my understanding are with you. Lori T.
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09-02-2008, 11:52 AM | #5 | ||
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It's so comforting i(n a weird way) to hear other people talk about having intermittent problems. Part of what is plaguing me is that everything seems to come and go so most of my doctors don't want to believe it's real. My BF even accused me of inducing symptoms at convenient times. sigh...
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09-03-2008, 11:30 AM | #6 | ||
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I have a Chiari at 5mm and the neurosurgeon said he didn't see any pressure on the ventricals and said he doesn't think it was causing any of my symptoms. I still have periodic dizziness and the world turning to one side with nausea. Heavier salavating, thickness in the throat, migraines, short-term memory loss, neck pain, pain behind the eyes, and many on the list of the above mentioned chiari site. Another neurologist said I have atrophy in the brain not expected at my age, the ventricals are much larger than he would expect at my age. He stated that my MRI's are what he would expect to see in an 85 y.o. man or someone with alzheimers. He said "I don't think you have Alzheimers." He is a resident neuro at Mayo. I am 46 yo. It seems that I have a lot of the symptoms of compression, but the other neuro doc said he sees no significant reduction of flow looking at the MRI's (this was in 2006)? This neuro doc is a well respected neuro on Chiari's here and I don't want to sound like I think he's a quack, but something is causing my symptoms. Should I get a second opinion?
Last edited by jsrail; 09-03-2008 at 01:07 PM. |
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09-03-2008, 04:18 PM | #7 | ||
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It would be a great idea to get a second opinion! My herniation was about the same as yours but the surgery was necessary because of the symptoms. I went to Mayo clinic, Madison WI, Milwaukee, Cinncinatti, Indiana and Chicago. Not to mention the local doctors. It was in little ole Indiana that I was diagnosed and in Kenucky where I had the surgery! I now see DR. Frim in Chicago as does my Daughter. He performed her surgery. and My Shunt surgeries. My oldest has it but with no symptoms right and her tonsil is at 4 mm so she does not need surgery. My Nephew started having some problems and Dr. Frim is going to look at his MRI soon. Hang in there and don't give up! Your not crazy and we all know how bizarre these symptoms can be. Take care Lori T.
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09-08-2008, 11:02 AM | #8 | |||
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yes 2nd opinion is a good idea . Dr. Menenez in Iowa is good
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