Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
So far I have been officially diagnosed with pseudotumor cerebri, diminished size of the vessels in my brain, and an erosion of my left sinus causing boney changes. I have been doing so much research on all of my issues, and I now seriously wonder if I have a CM? I mean it all makes sense to me. The symptoms are all there. I even have scoliosis, which wasn't severe enough to cause me to need to wear a back brace. I read that when you turn your head from side to side you get a crunching sound. I get that. I also went to a chiropractor several years ago for my migraines. I read that seeing them could in fact make matters worse. I have had chronic sinusitis since I was a kid, I started getting migraines at a young age too.
With age came the other issues. Numbness and tingling in my arms and legs, horrible burning sensations on my upper back from shoulder to shoulder, tight muscles in my neck and shoulder areas, vertigo,insomnia yet tired, dizzy spells, ringing in ears, hearing heartbeat in ears, heart palpatations, fast heartbeat, low blood pressure, bladder issues,blurry vision, pain in the back of my head, pain behind my eyes, weak muscles,hand tremors, lower back pain,slurred speech at times,forgetting simple things and my head and neck stay so hot most of the time with no fever.
So far I have had a head CT,VNG test, ENG test, blood drawn and I have seen the neurologist and he did all of those balance tests with me, coordination tests and checked my reflexes. I get an MRI and an EEG on the 11th. Will a CM be obvious on the MRI? I just do not think I have lupus or MS, which I know are the 2 main things they are testing me for. Is there a link possibly between my diminshed blood vessel size, the pseudotumor and CM? I just hope to get the answers I am looking for in the next few weeks. If I do have CM, I plan on setting up an appt. immediately with a neurosurgeon in Atlanta. I am so tired of being in pain all of the time.
With age came the other issues. Numbness and tingling in my arms and legs, horrible burning sensations on my upper back from shoulder to shoulder, tight muscles in my neck and shoulder areas, vertigo,insomnia yet tired, dizzy spells, ringing in ears, hearing heartbeat in ears, heart palpatations, fast heartbeat, low blood pressure, bladder issues,blurry vision, pain in the back of my head, pain behind my eyes, weak muscles,hand tremors, lower back pain,slurred speech at times,forgetting simple things and my head and neck stay so hot most of the time with no fever.
So far I have had a head CT,VNG test, ENG test, blood drawn and I have seen the neurologist and he did all of those balance tests with me, coordination tests and checked my reflexes. I get an MRI and an EEG on the 11th. Will a CM be obvious on the MRI? I just do not think I have lupus or MS, which I know are the 2 main things they are testing me for. Is there a link possibly between my diminshed blood vessel size, the pseudotumor and CM? I just hope to get the answers I am looking for in the next few weeks. If I do have CM, I plan on setting up an appt. immediately with a neurosurgeon in Atlanta. I am so tired of being in pain all of the time.
deleted_user
It sounds like Chiari! Before before diagnosed myself, I was misdiagnosed as having migraines. I went to a chiropractor for help because none of the medication that I was given was helping me. After the chiropractor "adjusted" me, I immediately began screaming and crying. This freaked out the chiropractor because he had NEVER had a patient do this. Fast forward about a year, and I have now been diagnosed with Chiari and Syringomyelia (thanks to an MRI), and have had the decompression surgery. To answer your question, your MRI will show if you have it or not, but make sure your doctor or whomever is reading the film, knows what they are looking for. Many doctors have never even heard of ACM, so make sure you get one that does!
deleted_user
It's perfectly acceptable to be at your wits end. A lot of times the psuedotumor cerebri can present the symptoms of a Chiari Malformation. I was misdiagnosed with it for a whole month before they found the CM. I am not saying it's not CM, but thought it may be a relief to you that it could not be CM. I can hear my neck cracking now but didn't beforehand. However, a lot of the symptoms can be mistaken for other things. An MRI would be able to show if you had a CM or not, so ask your doctor to do one. For your sake I'm not sure what would be the better diagnosis. I hope they can figure it out! Keep us posted:)
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