Carries Chiari Connection

Go To: http://www.carrieschiariconnection.com/eventsandreviews.htm to learn more about the Chiari Walk walk that took place last year! BUT TO LEARN more about the walks taking place THIS year-2009 please visit Conquer Chiari and read more coming soon to my site once I have worked out all the details. 

UPDATE:  Click on this link https://www.conquerchiari.org/ccwaa09/ccwaa_donate.asp?user= to sponsor me or any walker to show support for me and help find a cure! BE SURE to SELECT: URBANA, OHIO as the location of the walk.  There are two walks in Ohio this year and I want to be sure you choose the right one!

I will be doing another walk this year and the date is September 26th, which is a week later than originally planned so please change the date in your calendars!  I am looking forward to forming a "team" this year so please contact me if you would like to help with the walk this year!  The walk will be in Urbana again.  Urbana is in my backyard and is so much easier to gather everything up and set up on the day!  Last year the attendence was good but this year my goal is to improve the attendance...SO PLEASE join us!!  So, please plan ahead....mark it in your calendar (SEPTEMBER 26th) to come!  I am requesting sponsorship from anyone willing to make a donation...and no donation is too small! Also, I am in search of MAJOR corporate sponsors and I am looking for some guest speakers this year!  Please contact me if you know someone who can contribute their knowledge and time to our walk and also any cash donations would be greatly appreciated!  Please contact your companies that you work for, your neighborhood businesses, and anyone else you might think would be happy to have their name on our "GREAT SPONSORS SHOWING SUPPORT FOR CHIARI AWARENESS IN OHIO" .  This is a great opportunity for business to show their community support and for helping a great cause.  As most of you know, I have Chiari myself and live in Ohio and I believe it takes a very dedicated and very giving company to give to their VERY own community and show they care!  Please ask and encourage them to visit Conquer Chiari website and of course this website to learn more about the walk, the disorder Chiari, the events present and past, and how they can help!  I am proud to live in Ohio where our companies have always seen community fundraising and awareness events in Ohio as a top priority to donate money and also small give-aways for the walk! Last year we had a large number of local companies donate small gifts to give away and the baggies we handed out were talked so highly about and people commented that it was well worth the drive to come and get the great give-aways that they received!  This year I plan on having more give-aways and another raffle!  If you have any gifts or "packages" (packages to help in the economical crunch would be GREAT this year sinced we are all affected by the economic struggles-such as grocery store gift cards, gas cards, etc..) you are willing to donate for this event please contact me at carriebear31@msn.com soon so that we can get this ball rolling! Woooo hoo...I'm so excited because I know this year is going to be great and I can't wait to see the good will and the big hearts of those in the community and those around the world!

Hugs...and many thanks to you all! I know I could not make this upcoming walk a success without your kindness and your dedication! 

DONT FORGET:

I will also be displaying the Proclamation (shown below) stating that September is Chiari Awareness Month is OHIO from Governor Strickland for the third year in a row! You have to come out and walk to at least see that! This is something We are very proud of!  The proclamation is not only beautifully put together but it's a piece of our history in Ohio and in the Chiari community!  This proclamation is showing the support of our state and it signifies the strength and dedication of not only the state of Ohio but of the people who came together to bring out the awareness of Chiari and it's related disorders.  This is not only occuring in OHIO but also in many other states across America! These proclamations are being brought forth by hard working Chiari patients and family members all over and they should be recognized for the hard work and dedication!   So many have written to their governors and statesmen to obtain and display a proclamation and this is an honor to us with Chiari to be able to proudly display this great gift from the Governors and statesmen who have listened and understood the importance to making Chiari a more recognized disorder and helping us to gain attention all over the world for this disorder that has affected so many people around the world! 

One step at a time....we will find a cure...we will be able to understand and educate doctors, surgeons, employers, schools, the general public and many more! Together we can make a difference! Thank you so much for your support and your contributions!

Patients with CM1 (Chiari 1 Malformation) may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.

Chiari: (CM1) A serious and rare neurological disorder which can be genetic or acquired. 

Facts:

Chiari is a herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.

Patients with CM1 may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children.

The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet.

Women are affected three times more often than men.

Current estimates range from 200,000 to 2 million Americans with the condition

Approximately 3,500 Chiari operations are performed each year in the United States.

MRI (magnetic resonance imaging) is the most effected way to detect CM1

The decision to treat patients surgically requires a detailed consultation between the patient and physician

Research has shown that surgery can improve symptoms for about 80% of patients, but fails about 20% of the time.

Chiari can place a tremendous physical, mental, emotional, and economic strain on patients and their families.

Complications associated with Chiari:

syringomyelia (SM) is a neurological disorder where a fluid-filled cyst ( syrinx) -develops inside the spinal cord.  This cyst can grow over time, causing the spinal cord to expand and stretch nerve tissue.  Eventually, the syrinx can cause permanent nerve damage and paralysis. 

Causes of syringomyelia?
 About 30%-50% of people with Chiari also have syringomyelia.  Syringomyelia can also form after a spinal cord injury (SCI), such as from a car accident or fall; this is called post-traumatic syringomyelia (PTS).  PTS can form months or even years after such an injury.  Syringomyelia can also be the result of a tumor or mass in the spinal cord. 

When a syrinx forms

Over the years there have been several theories as to why a syrinx forms (mostly dealing with the effects of a Chiari malformation on cerebrospinal fluid flow), but none have been universally accepted or proven.  One current theory states that the cerebellar tonsils act like a piston and beat down into the spinal area with every heartbeat.  This piston motion then forces cerebrospinal fluid (CSF) into the spinal cord itself, where it forms a syrinx.  However this theory does not account for evidence that the pressure inside a syrinx is higher than outside and that syrinx fluid does not exactly match CSF. 

What are the symptoms of syringomyelia?
Because the syrinx is putting pressure directly on nerves, the number one symptom associated with syringomyelia is pain.  Many patients report severe pain in the neck, upper back, and shoulders.  Doctors refer to this as the "cape effect" of syringomyelia - meaning pain in the area where a cape is draped over the shoulders.  For patients with a syrinx located in the thoracic region of the spine, the pain may be in their chest, stomach, or lower on the back.  In addition, many people with syringomyelia lose strength in their arms and legs and develop numbness in their hands and feet.  Additional symptoms include trouble regulating body temperature, abnormally stiff muscles, and loss of bladder and bowel control. 

syringomyelia can cause and lead to paralysis:

If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually.  However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery.  The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery.

16mm Herniation

Before Chiari Decompression surgery

A large number of people ask about the size of their herniation and want to know how many mm are in a cm.  So here is a little help with the conversion:

Update:  I had surgery on January 7th! ...Please click http://www.carrieschiariconnection.com/mydiary.htm to read my diary entry for more info. Thank you all for your love and support through-out my recovery!!

Everyone who has Chiari and also the Chiari Decompression surgery responds differently.  Not everyone has the same outcome and should ALWAYS talk with their neurosurgeon to make sure this is the best decision for you.  It's important to know what can be achieved through surgery and what are the risk involved.  Also, it's important to understand that surgery is not a cure.  Surgery normally is performed to decompress the area where the hindbrain and other parts of the brain that are being harmed due to Chiari 1 Malformation.  This can but does not always increase the function of CSF flow which may have been blocked also due to the Chiari Malformation. It's important to understand the possible outcome of your surgery by a licensed professional Neurosurgeon before making a decision.  Also, decompression surgery is not always done the same between all neurosurgeons and it's VERY important and your RIGHT to know how much your neurosurgeon knows and understands about Chiari.  Ask: How many Decompression Surgeries have you performed? If your neurosurgeon is a caring and professional person he would not be offended by any questions and would take the time to completely explain everything to you until you feel comfortable.  Decompression surgery is NOT a minor surgery! Please visit http://video.google.ca/videoplay?docid=326561660545641575 to see and learn more about Decompression surgery. You can also try typing in the following information into your search engine:

Be sure to join in with raising awareness by passing on Chiari info....forward your favorite Chiari website (could be mine..lol) Educate your friends, co-workers, family..etc.  Lets not wait for September before we raise awareness.  It's important to do all year around!! Please visit my guestbook and add your story or info to the forum section.  Remember, you can create your own topic in the forum section...Ask if you have any questions.

"Raising Awareness One Step At A Time..."

~Carrie