"Hi Selma, thanks for your response. It’s so frustrating that doctors withhold info like that! I’ve experienced info being withheld as well!
I believe our spinal issues are different. From what I’ve read, you have stenosis, which is a na..."
lynnbrook177's Profile
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About Me: Female, 60, Toronto, member since May 2011
Diagnosed with Chiari 1, April 2011
Interests:
decorating gardening, emotional health, Pain, Back pain, Headache, Anxiety
Aug 27, 2020
"I have recently been diagnosed with an atrophic change on my spinal cord at T5, and was diagnosed with Chiari Malformation 10 years ago.
For many years, my symptoms weren’t too bad, and doctors put most of them down to anxiety!!
This r..."
Aug 27, 2020
"I think the ever changing symptoms, (as well as the usual continuous symptoms) are confusing to me, let alone a doctor! When I’m asked, “what are your symptoms?”, by a doctor, I often don’t even know where to begin, it’s so extensive! :(..."
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02/12
A little happy note to say I hope today gives you every opportunity to experience the fullness of what you can have in this day. Even if it is just a smile, enjoy.
06/11
Just a quick note to say hi! new to the site trying to make friends i am considering surgery but so many conflicting stories
06/11
Thanks they actually unfused my c1 during the decompression surgery and I worked with a chiropracter before surgery that worked closely with Dr Oro so when I feel healed up enough I may have her help my neck I think I have cranial pressure so I don't think the CSF is good which I hope is the case since that would be an answer that could be fixed so it will all be good-one day at a time-best of luck to you!
06/11
Congrats on not having to have surgery-I am not an expert but would say all the other symptoms you have are definetly chiari related. I wouldn't do surgery until you can't go anymore because it is so huge and now that I am getting headaches again am hoping it was worth it. Your symptoms may just plateau and not get worse. I also have degenerative joints in neck that is in part to the chiari my c1 was fused to my skull so my neck is curved wrong! I learn something new everyday about it am going to a new NL on Tues and just pray he listens if not move on to another- Hope that helped and best of luck!
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