Chiari Malformation type 1

Lol... Sorry, if you just read around you'll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into "blunt trauma", usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you'll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there's nothing they can do. My brain's on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it's not happening now. There aren't even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There's a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can't work, and I think my IQ of 156 is now more like 56.

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He is not a specialist in Chiari, but has done decompression surgery, he is one of the best neurosurgeon in our area. I have been with him since 2009 and trust him. He is not quick to do surgeries, that is what I like about him. For pain control, I am now on 40mg of norco a day, but it does not help. I have an appointment with my pain specialist next Friday, but i am not hopeful he will be able to help. My regular doctor told me i was to complicated for him, lol. So I decided to change doctors. I have tried to research options for pain control, but have not been able to find anything.
Thank you for redponding.

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Hi this is my first time. I was diagnosed 3 years ago with a chairi malformation. My symptoms have gotten worse causing me to not have my life. I have seen 2 different neurologist saying my symptoms are from migraines. How can you tell the difference between migraines and a chairi?

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Lol... Sorry, if you just read around you'll find many of us have debilitating headaches, dizziness, confusion, skin sensitivity, not really able to use arms or hands much from pain and weakness, temperature control problems, unusual bruising or ability to turn bruising into "blunt trauma", usually from a fall, nausea, blurred vision, light sensitivity, minor/severe balance issues, seizures, light-headedness, passing out, scoliosis and other related conditions, drooping face, drooling, going right when the GPS says left, food tastes funny, slight drooling, sleep problems, and most of all? PAIN. INCURABLE PAIN. Without any cures, when you look around you'll see surgery usually makes it worse, this condition makes doctors turn you into a drug addict because there's nothing they can do. My brain's on the list for scientific donation at the Miami brain bank to try to help a generation sometime, somewhere because it's not happening now. There aren't even any clinical trials. I hope this helps, and may explain other weird or painful things that may begin to happen. But if you have insurance? FIND A SPECIALIST. There's a new center in Wisconsin and UCLA just opened a center. This is only the beginning. I have 3 college degrees, can't work, and I think my IQ of 156 is now more like 56.

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@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to "be yourself again"! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

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@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to "be yourself again"! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

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Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I've come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

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Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I've come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

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