About Chiari

Welcome to the world of Chiari Malformation! More than likely, you are here because you or someone close to you has been diagnosed with it. If you are like the rest of us, you had probably never heard of it until you received the news. 


This blog is about my individual journey with Chiari and all of its related disorders. I also hope to provide some helpful information along the way. Please check out my other pages here at the top to learn about symptoms, tests, and related conditions that you might encounter. 


What is Chiari?


In a nutshell, a Chiari malformation happens when your skull is just too small to hold your brain in adeqautely. As a result, your tonsils extend down into your spinal column and fluid flow is reduced and sometimes cut off altogether. 


Is there a cure?


There is currently no cure. You can't make your head bigger and you can't make your brain smaller. A decompression can be performed to try to create more space, however. Other surgeries, like placing a shunt, can help drain excess fluid and help stop the progression of the condition. 


Am I going to die?


Probably not. Although brain surgery is risky business, death due to Chiari is rare. That's not to say it doesn't happen, of course. Most of the Chiari related deaths have occurred in conjunction with other related conditions, such as sleep apnea. 


Chiari related deaths are not unheard of. Most of the deaths, however, arise from various complications that can happen either due to the many surgeries or from the related conditions. That's one of the reasons why getting tested for all the conditions is important. 


Then why is it a big deal?


You need good fluid control. Your brain controls everything in your body-from your vascular system to your digestive system. Therefore, EVERYTHING in your body can be affected by Chiari. Some people experience permanent nerve damage and paralysis. Others have a drastically reduced quality of life. It's not a fun thing to live with and can affect your ability to work, function, and enjoy personal relationships.


For more information about this, see the "symptoms" page at http://beckschiari.blogspot.com/p/chiari-symptoms.html


How did I get it?


You might have been born with it. Research does suggest that it might be genetic. On the other hand, some people acquire it later in life due to trauma or even an epidural.  The only way to really tell is if you had a MRI in the past that did not show a herniation and now you suddenly have one. 


Who treats Chiari?


You will have a medical team that should all work together. Although a Chiari specialist can help you find a good course of action (and it's usually surgery) right now there really aren't that many people who just handle Chiari itself. Most patients have a neurologist, neurosurgeon, rheumatologist, primary care doctor, endocrinologist, and even a pain management specialist. Finding good doctors who know what they are doing is essential. A good neurologist (or NL) will help you manage your symptoms. After you have had surgery, your neurosurgeon (or NS) will probably no longer work with you. Therefore, you really need to find someone who can help with your on-going care. 


Am I considered disabled now?


Some people with Chiari do end up filing for disability. This is a personal choice. Having Chiari does not automatically make you disabled. However, you might come to a point where you find that carrying out your job duties is impossible. I currently own my own company and still work 40-50 hours every week, but having Chiari does make things difficult at times. 


Many people who file for disability also have related conditions. Since Chiari affects people differently, your symptoms will determine whether or not you are a good candidate for disability. 


Are there any other treatments besides surgery?


Some people can successfully treat their symptoms without surgery. If you have a lot of symptoms, however, this might not be possible. In addition, if your flow is completely blocked or you have a syrinx then surgery might be a necessity. I have more than 25 symptoms myself. Trying to treat each one individually would be a nightmare. 


Is it possible to not have any symptoms at all?


Yes, it's possible. Some people are asymptomatic for many years and only discovered that they had Chiari by accident. Eventually, however, it does appear that most people do end up having at least a few of the symptoms. 


Sources:


Mayo Clinic- http://emedicine.medscape.com/article/1143167-overview
National Institute of Neurological Disorders- http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
The Chiari Institute- http://www.chiariinstitute.com/chiari_malformation.html
American Syringomyelia & Chiari Alliance Project- http://www.asap.org/index.php/disorders/chiari-malformation/
Chiari One- http://chiarione.org/
Medscape- http://emedicine.medscape.com/article/1483583-overview




1 comment:

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