By: B l air Hagelgans

1. Chiari Malformation By: Blair Hagelgans

2. How it is inherited • They do not know what genes are responsible for this disorder. • Researchers are studying the genes in order to find answers.

3. 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

4. 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

5. 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.

6. 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.

7. 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 What I Learned

8. References • www.ASAP.org • http://www.chiariinstitute.com/chiari_malformation.html • ASAP booklet