Aa
syringomyelia and chiari
hi all,my 16 year old daughter has a 9mm syrinx from T6-T11,it was thought that this was the cause of her mobility problems,but a muscle biopsy was done to be certain the syrinx was the cause of her problems.but unfortunately the results of her biopsy then shown she has an extremely rare muscle disease also which was totally unexpected.ive searched everywhere for information about her muscle disease but cant seem to find any answers.its called centronuclear myopathy.if anybody has heard of this id be grateful of any feedback.
but as this is chiari and syringomyelia forum,i would appreciate any help or advice in trying to understand the difference between the two,could syringomyelia develope into chiari and are there any symptoms or signs to look out for.or are the two totally different conditions with thanks
but as this is chiari and syringomyelia forum,i would appreciate any help or advice in trying to understand the difference between the two,could syringomyelia develope into chiari and are there any symptoms or signs to look out for.or are the two totally different conditions with thanks
Best Answer
hi,of all the forums on medhelp i have searched through,chiari malformation has been so amazing in the sense that the people on this site are so caring and understanding,and reply and give advice in any way they can and even if they cant they offer ther support,its quite overwhelming.i thankyou again for your response and kind words
with love
lisa
with love
lisa
You are so welcome Lisa, I put myself in others shoes I cant help myself. I can only imagine what you are you daughter are going through. I hope the post above helped a bit, I think I will have to go check it out so I can learn more. Stacey
My father and I are diagnosed with centronuclear myopathy also. You can read our story at http://centronuclear.org.uk/theinformationpoint2010/pages/share_a_story/adults/toni_and_mike.html.
Do you know which form of the condition your daughter has? You can read about the different forms at http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html.
If you would like to connect with others with the condition, you are most welcome to join the CNM / MTM community at http://www.facebook.com/pages/The-Information-Point-for-Centronuclear-and-Myotubular-Myopathy/131343560236673?ref=ts.
Do you know which form of the condition your daughter has? You can read about the different forms at http://centronuclear.org.uk/theinformationpoint2010/pages/about/about.html.
If you would like to connect with others with the condition, you are most welcome to join the CNM / MTM community at http://www.facebook.com/pages/The-Information-Point-for-Centronuclear-and-Myotubular-Myopathy/131343560236673?ref=ts.
hi,i have searched high and low regarding my daughters muscle disease,as her centronuclear myopathy is again extremely rare that specialists and consultants alike dont know how it will affect her..as a mum i will never stop searching.. but also,can i say, i cant thankyou enough for the time you have taken out your life to offer help and support and its made me realise how special medhelp really is..your reply has given me a sense of hope and i appreciate your advice,with sincere thanks again lisa
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As for the Syrinx and Chairi, usually the Chiari develops first making the cord vulnerable to Syrinx cavities. Signs and symptoms are
Headache, sometimes pressure like headache or migraine like head pain
Neck/ occipital headaches and pain
Issues swallowing and sleep apnea and big red flags
Loss of pain and tempature sensation from the Syrinx
The difference between Chiari and Syringomyelia
Chiari is the downward displacement of the lower hind brain causing blockage of normal flow of spinal fluid,
When this happens, over time the pressure can cause damage to the spinal cord and the Syrinx cavity forms from this blockage in some cases.
There is a lot of links and info in the health pages and videos on the internet you can watch that will help you learn more. Try The Chiari Institute web site, they have many great video's to help people like you and your daughter.
I will try to post again soon with info on the muscle disease, sorry to hear you are having to go through all this. Glad you found the forum, Stacey