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theroselvr

September is Chiari Malformation awareness month

theroselvr
11 years ago

I met a gal online a few months ago & started helping her with emotional support for her 3 year old that was diagnosed with Chiari Malformation. It's been a long few months for her; fighting to get her daughter pain free; surgery which looks like it failed; now she's looking at another surgery. I text her a lot; you would not believe the pain this beautiful little girl deals with every day.

My friend went back & forth with making a page for her daughter because of the way people steal photos & you will see them pop up on FB years later. With September being Chiari Malformation awareness month & her surgery failing; she really wanted to get the word out about what these kids go through. This is her page; you will see how adorable she is. Her nickname is Love bugs

Hugs For Bugs

September is Chiari Malformation awareness month. Some times there are no symptoms; others there are various symptoms that get over-looked; especially in children. Kids may hit their head or ear; zone out; complain of head; leg or arm pain. Another is gagging on foods.

Sadly; there are many people that are being misdiagnosed with Multiple sclerosis. Still others with chronic migraines. Learn the symptoms. Learn when a headache; isn't a migraine & where to turn for help. The number of people affected by Chiari malformation is about 1 in every 1,000 people. Its also NOT as rare as doctors allow people to believe. Most doctors have no clue how to even measure as well as look at symptoms. Most common symptom is severe headache, usually in the back of the head, and made worse by activities such as straining, coughing, sneezing, or bending over. It can cause many additional symptoms, including balance problems, pain and weakness in the arms and legs, and trouble speaking and swallowing, to name a few. It's diagnosed using MRI & a neurological exam. Surgery, involves removing part of the skull and spine, and sometimes sewing a patch into the natural covering of the brain. About 20% experience no relief or get worse. In some people, can lead to another serious condition, known as syringomyelia, where a fluid-filled cyst develops inside the spinal cord. It is believed that people are born with it. Symptoms can develop at any age, but commonly become noticeable either in childhood or in a person's early 30's. It's also fatal when people don't know they have it; as was what happened to a 6 year old little boy Bryce Autry that had a fall from a wagon.

More info

Here is a link that might be useful: Conquer Chiari

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