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← Return to Chiari Malformation type 1
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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.
Replies to "Lol... Sorry, if you just read around you'll find many of us have debilitating headaches, dizziness,..."
My I ask if you think you had it done early enough that it helped with the out come of your surgery.
NannieSue,
Please tell us a little bit about your diagnosis. You mentioned in another post that the malformation is small. What more can you tell us? Are you considering surgery?
NannieSue,
I also wanted to tag @dink75 @vbrunette and @luckygirl on this discussion. You may also wish to watch this video Q&A with Dr. Nicholas Wetjen, neurosurgeon, and Dr. Mai-Lan Ho, neuroradiologist, where they talk about congenital anomalies of the brain and skull, including chiari malformation.
- #MayoClinicNeuroChat about Congenital Anomalies of Brain and Skull http://mayocl.in/2qRkMqh
Your "pre-decompression" experiences sound exactly like mine: no occipital headaches, mine were diagnosed as sinus headaches but did have your other symptoms. Was actually diagnosed because I blacked out and fell, hurting myself, while I was bending down, and an MRI was o
Yes, I have absolutely no doubt at all that had I been operated on sooner that perhaps I would not have been left with nerve damage in my back. The pain only started in my thoracic area about 12 months before I had decompression surgery. The longer it's left untreated the worse it gets. Hope this helps but DO find a surgeon who if familiar with decompression surgery.
How are you now and are you on medication?.
Definitely, I didn't have many of the symptoms that others have with Chiari but the sooner it's treated the better the outcome.
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The very best thing you can do is to find yourselves a really good neurosurgeon who is familiar with decompression surgery. He needs to have performed a lot of them so do your research. Please do not be fobbed off by doctors who tell you it's all in your head!!. First thing is for your doctor to arrange for you to have an MRI scan and then you demand to see a neurosurgeon.
I had decompression surgery almost 12 years ago. I never had the headache but other vague symptoms for 9 years and it was only when I had an MRI scan that the Chair 1. and Syringomyelia was diagnosed.
I have been left with some nerve damage in my back and I take medication for that. Other then that I lead a very normal life. I think I am one of the lucky ones because I had a fantastic surgeon operate on me. Please do your research as there is help for you. Make your doctor listen to you and shout if you have to.