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07-19-2009, 09:38 AM | #11 | ||
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08-18-2009, 08:04 PM | #12 | ||
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[B]I'm sorry but I'm not sure if I'm posting this correctly. I had a stroke while driving to work in January. The problem is I'm still having problems with my balance. If I look up or to my right I become very dizzy. If I fall asleep and my head tilts back and to the right, I immediately wake up nauseated.
My neice was visiting me for the summer and witness something that terrified us both. My neice said that when I become dizzy she notices that my eyes move side to side very fast and then rotate. I also have severe headaches in the back of my head. I have gone to several neurologist that said that they didn't see anything on the MRI. I was also diagnosed with chiari malformation. The neurologist said that the chiari malformation was so mild he wouldn't even consider surgery. I am now suffering from depression and have seriously considered suicide. I don't know where else to turn. I can't continue living this way. Every time I place my head in certain positions I faint. I have every test imaginable from a ENG to check problems with my inner ear, a doppler of the sides of my neck, MRI of my ears and a tilt table test. All of the doctors referred me back to the neurologist. The neurologist treats me like I'm a hypercondriac. I don't understand if I had chiari malformation since birth why it is effecting me now. I don't even know how to find a doctor that specilizes in chiari malformation. I would appreciate any suggestions. Please help me your my last hope. |
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08-19-2009, 05:31 AM | #13 | ||
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Greetings all. I too was born with CM and experienced adult onset of symptoms. In doing research on the topic, CM can present some 80 symptoms and every one is affected differently. This poses difficulties to doctors in making a sound diagnosis.
The MRI is the test to determine CM, but does need to be read by a radiologist, neurologist, or neurosurgeon who knows about CM. Normally, doctors do not perform sugery to correct CM unless the desent of the tonsils into the spinal column are 5 mm or greater, this is their standard. However, blockage of cerebral spinal fluid can be blocked with a size of 5 mm or less bringing on symptoms. A CINI MRI can be used to determine fluid blockage and as a patient, you will most likely have to insist on this type of MRI to make a determination of the blockage. Your best bet is to research the doctors available to you to find out if they are experts in the CM area. This is the only way to achieve better results in your body. Peace, David |
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09-01-2009, 09:53 PM | #14 | ||
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Hi! I sent an email to the admin on here looking for a doctor who can help me, and any opinions would be greatly appreciated. I was diagnosed with Chiari 1 in December, after my Rheumotologist thought I should get an MRI after seeing her for almost 2 years for Fibromyalgia. I was sent to a Neurologist who told me that my Chiari isn't bad enough to cause any of my worsening symptoms, and said that I had 3 bulging discs as well, and that with the Fibro was causing my problems. He recommended an anesthetic block for the pain in my neck. I decided against that because of the low success rate, etc. My Rheumo continues to attempt to treat my Fibro pain with all the common Rx's (Lyrica, Cymbalta) that don't work, and treats my pain as minimal, and pretty much acts now like I am a drug seeker. I am in pain every day, I am starting to have trembling in my hands (which she treated with Nortriptyline), and many other symptoms. I feel helpless!
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09-02-2009, 10:36 AM | #15 | ||
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andi1978, greetings. Chiari is very misunderstood and you do need an expert in the field. I see you live in Bristol, VA. Being from VA, know you are limited in getting local quality medical assistance.
The hospital at UVA, Charlottesville has an excellent neurosurgery dept. that knows how to deal effectively with Chiari patients. In addition, Medical College of Virginia, Richmond also has an excellent neurosurgery dept knowing all concerns about Chiari. These are 2 good resources for you. Your PCP may have to refer you to get in to either dept. And travel will be involved, but might be worth the drive. Peace, David |
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10-01-2009, 01:45 PM | #16 | ||
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I am also newly diagnosed as well with a 12 mm chiari. Mine was missed by the radiologist but caught by the neurologist who just said "oh it's looks like you have a chiari but it doesn't look like it's bothering anything". I then went back to our radiologist and asked for a measurement. That is how I know how big it is. Since the measurement, I have only seen my rheumatologist and fam dr. No one really seems interested...
I too would consider my symptoms as mild and confusing at best. I have the headaches with straining, laughing or crying. The rest of what goes on was suspected to be autoimmune of some type but undiagnosed. They are treating me for fibro and hypothyroidism. I think they are making a stab in the dark. I had extreme fatigue and bilat pain in my fingers and feet. At this point I am on so many meds that I don't know what's real and what's caused by the meds. I am starting to choke more but my mouth is dry from meds...I am starting to loose by balance more, but maybe I might have a sinus infection...I have edema in my legs but that could be from meds... I had the "dropsies" for a while but it got better... I lost movement of the first three digits of my left hand for about a month, but it resolved itself... See what I mean? I am unsure where to go next. Are there any chiari drs around west Virginia? I live where west Virginia borders Ohio and Kentucky...any thoughts on symptoms or specialists would be great. |
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04-16-2011, 11:39 AM | #17 | ||
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Hello, My name is Lhiza and I am diagnosed with Arnold Chiari too, I had an operation last October which seems to be successful. The problem was they left it too long that fluid accumulated in my brain called hydrocephalus so I ended up having s chunt fitted in which will be there for the rest of my life. But after the operation, im back to my normal activities as if nothing happend. I am happy now, but not very impressed with the way doctors mis diagosed my problem, now that the real problem was sorted out, Im am back to what I was before. Please go and see your doctor again especially if your symptoms are getting worst. Once damage is done in the spinal column there is no treatment. Dont leave it too long. |
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04-16-2011, 01:19 PM | #18 | ||
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Kelsie g i suffered migrains spinal problems balance issues left side weakness last year at 46 they found chiari so low it was setting on spinal canal blocking the flow of csf this is very serious so many things can happen breathing issues heart rate you need second opinion an a neuro s i i had chiari decompression surg 7 m ago to give it some room keep asking until you get an answer this is serious
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06-01-2011, 07:40 PM | #19 | ||
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I am going through the same thing and I have tried neurontin and it did not take the pain from my face. I tried topamax now and I am severly depressed. I will call the doc tomorrow. My first opinion neurosurgeon told me there was adequate flow to the brain. I have 7mm-8mm. He said he would not operate. I am going to get a second opinion June 23rd in Philadelphia. It is very depressing. My daughter is 22 and has some similar complaints also.
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06-20-2011, 03:30 PM | #20 | ||
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