BY: BLAIR HAGELGANS

Malform

at

ionChiar

i

They do not know what genes are responsible for this disorder.

Researchers are studying the genes in order to find answers.

How it is inherited

SYMPTOMS Headache Neck pain

Brought on by sneezing, coughing, or straining.

Nystagmus(involuntary eye movements)

Doubled or blurred vision Balance difficulties Vertigo and dizziness Apnea(lapse of

breathing) Gagging

Swallowing difficulties Facial numbness Syncope(temporary

loss of consciousness) Muscle weakness Coordination problems Syrinx Hydrocephalus Scoliosis And many others

Statistics How common it is

It is not common, but more common then it used to be due to MRI imaging.

Some people don’t show symptoms until adolescence or adulthood. It is often misdiagnosed. If you know you have it but don’t have symptoms you can

potentially live a normal life. Some people go through their whole lives not knowing they have a

Chiari. How many people have it

Estimates range from 200,000 to 2 million Americans. Men vs. Women

3 times more women have it then men Is there a specific race it is more common in?

No

TREATMENTS/PROGRESSION Treatment

If symptoms are mild and not progressing, the doctor might recommend conservative management.

Headache and pain management Physical therapy Reduction in activities

If symptoms are extreme they will recommend an operation. The operation

Remove small pieces of the skull bone. Reduces compression of the brain stem allowing the tonsils to move back into position.

In hospital for 3 to 5 days sometimes longer if there are complications. After 4 to 6 weeks you can return to doing activities. Not allowed to do any contact sports or whiplashing movements. Physical therapy is sometimes recommended after surgery. They do 3,500 operations each year.

Life span There is no specific life span. If you have other associated issues going on you might live

a shorter life. Can it be cured

There is no cure, only different kinds of treatment. Only be monitored and slightly controlled. Can treat some symptoms by medications, physical therapy, or surgery. Researchers and neurologists are trying to find a cure for this horrible disorder. People just live there live to the best they can.

How People Are Affected Financially

Many doctors appointments to pay for Surgery is expensive Have to pay for medication Other care needs Having this disorder is very difficult because it involves a lot

of different expenses Emotionally

Very difficult to deal with You have to be more cautious about what you can and can

not do It affects your everyday life Harder for younger kids especially because they have to deal

with being the odd one out at school and everywhere else. Physically

You feel pain all the time and its hard to do things. It affects your work because its harder to do your job School it highly affected because there are many restrictions

and its difficult to go and do things Its hard to get out of bed and do everyday activities even

just going to hang out with friends.

*What I Learned * That a lot more people have the disorder then I thought * There are many more symptoms then I knew of* I learned that they really don’t know what gene causes Chiari* that 3,500 operations are done each year

References www.ASAP.org http://

www.chiariinstitute.com/chiari_malformation.html

ASAP booklet