redfathom Posted October 9, 2008 Posted October 9, 2008 Anyone else here have Chiari or have a family member with it?
Author redfathom Posted October 9, 2008 Author Posted October 9, 2008 I think I should explain what it is: Chiari is a herniation of the brain often called a tonsilitis. Basically your skull is too small for your brain and part of your brain squeeze through the bottom of it into your spine and blocks the spinal fluid. There are different types I-III depending on your age group regarding diagnosis. It can cause a range of symptoms, often nerve realted which vary from person to person. Headaches/migraines are the most common, GERD, leg or arm weakness, dizziness, fatigue, blurred vision, memory problems, frequent urination, nauesea, and tons of others. The ones I listed are the ones I have. My sisters friend has it and had decompression surgery, they basically cut into the back of your head and remove part of the skull to ease the pressure on the brain. There is no cure, the surgery only helps to releive symptoms. He said that it's almost always required to have the surgery, sooner rather then later, because symptoms will only get worse. It can (and usually does) also cause Syrinx on your spine which can lead to paralysia (sp), or this is what I have been told. I have a follow up MRI to the one I had three years ago when I was diagnosed (I have not followed up since because my DR at the time told me not to be worried about it). Since then I have been going to the doctors for the above symtoms and getting tested and/or treated for each symptom seperatly. The last doctor whet so far as to tell me it is just stress and depression. Anyways, I have an MRI schedule for later this month. I am basically looking for information and to help me make educated descision on my future with this condition. Thanks for listening.
ShoeGirl Posted October 27, 2008 Posted October 27, 2008 I have a good friend who has/had a chiari, she had surgery when she was 16 and is 22 now. The doctor that did her surgery has a website dedicated to chiari and syringomyelia, check it out and let me know if you have more questions, I will ask her or ask the neurosurgeon I work with.
Author redfathom Posted October 30, 2008 Author Posted October 30, 2008 Hi Shoegirl! I have been on a few websites. Do you know the name of her doctor? I know there is a place in New York that specializes in CM and SM. I can't go out of network with my insurance, but I did have part one of my follow up MRI's on Monday and my doctor has referred me to a neurologist so I can then hopefully get refferred to an NS a few hours away who specializes in this. I hope your friend is doing well!!! Thanks for posting
ShoeGirl Posted October 31, 2008 Posted October 31, 2008 Hi Shoegirl! I have been on a few websites. Do you know the name of her doctor? I know there is a place in New York that specializes in CM and SM. I can't go out of network with my insurance, but I did have part one of my follow up MRI's on Monday and my doctor has referred me to a neurologist so I can then hopefully get refferred to an NS a few hours away who specializes in this. I hope your friend is doing well!!! Thanks for posting She had her surgery in Seattle, Wa by Richard Ellenbogen, do a google search for "UW Medicine Chiari" his is the first site. It seems that you are across the country from us. Turn on your PM and PM me if you want to ask questions as you go through this process. I work for some spine and neuro surgeons so on top of her experiences I can find out other info if you want. Let me know if you need info as you go though this, I would be more than happy to help!
Author redfathom Posted November 8, 2008 Author Posted November 8, 2008 She had her surgery in Seattle, Wa by Richard Ellenbogen, do a google search for "UW Medicine Chiari" his is the first site. It seems that you are across the country from us. Turn on your PM and PM me if you want to ask questions as you go through this process. I work for some spine and neuro surgeons so on top of her experiences I can find out other info if you want. Let me know if you need info as you go though this, I would be more than happy to help!Hi ShoeGirl, I do have a question if you could ask the people you work with. In addition to the 9MM herniation I have with Chiari the doctors also found a Pineal Cyst. He said it appreas to be asymptomatic but something we can monitor. I was looking this up online and found that is can cause headaches and dizziness as well as Hydrocephalus which can cause "elevated intracranial pressure may result in uncal and/or cerebellar tonsill herniation, with resulting life threatening brain stem compression." So would/could this cyst have caused the Chiari? Thanks again for posting back it really helps to have someone to talk to!
ShoeGirl Posted November 25, 2008 Posted November 25, 2008 Hi ShoeGirl, I do have a question if you could ask the people you work with. In addition to the 9MM herniation I have with Chiari the doctors also found a Pineal Cyst. He said it appreas to be asymptomatic but something we can monitor. I was looking this up online and found that is can cause headaches and dizziness as well as Hydrocephalus which can cause "elevated intracranial pressure may result in uncal and/or cerebellar tonsill herniation, with resulting life threatening brain stem compression." So would/could this cyst have caused the Chiari? Thanks again for posting back it really helps to have someone to talk to! Sorry it took so long to reply, my computer crashed a few weeks ago so I am just now getting back on here. I did talk to a few docs and they all say that no the chiari was not caused by the cyst, it was likely the other way around or they were completly seperate but we can't tell without seeing your MRI. Let me know if you have anything else you want me to find out, I should be on here a little more often now.
Author redfathom Posted November 25, 2008 Author Posted November 25, 2008 Oh, sorry about your PC, that sucks! Thanks for posting and asking them my questions for me! I have an appointment for a 2nd opinion on 12-3...I will let you know how that goes. Hopefully this 2nd doctor can clear up any other questions I have. Thanks for replying!
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