"Welcome To Chiari Lifeline."

Chiari Malformation is a serious neurological disorder where the cerebellum, the bottom part of the brain, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine. There are over 100 reported symptoms that are caused from CM. Those most common include; severe headaches, fatigue, general imbalance, memory problems, visual disturbances, dizziness, just to name a few.

CM affects about 1 in 1,000 people and this number continues to grow. Still many are left suffering and go years without a proper diagnosis as many doctors are yet unfamiliar with this condition.

If you or a loved one is affected by Chiari please visit the links provided below. Together, we can make a difference!


January 27, 2008

Chiari Malformation - Three Main Types; (by TCI)

For the next several posts, I'll be sharing information given to me by TCI in regards to CM and related disorders. I hope you find it both informative and helpful.



Chiari Malformation: Chiari Malformation (CM) includes a complex group of disorders characterized by 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 (CSF) in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.

There are three main types of CM.
*CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth.

CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord.

How is CM diagnosed?
CM is most often diagnosed by viewing the malformation on a patient's MRI of the head and spine and reviewing the patient's symptoms.

Patients may also undergo a variety of other testing, depending on their symptoms, including various MRIs, x-rays, CT scans, MRAs of the brain, spine, and skull including cine-MRI and
3D CT scans.

Because of the complexity of some patient's symptoms and the similarities between these symptoms and the symptoms of other disorders, patients often are misdiagnosed.
(For a list of CM symptoms, please click on symptoms list listed on home page.)


Next posting I'll share information in regards to CM and pregnancy. Thank You. Read more!

January 19, 2008

Back Home Again!

First of all, I want to thank each and every one of you for thoughts, prayers and words of encouragement. This week has been quite an experience to say the least and I'm so glad we decided to go to TCI. They were simply wonderful! So here's the scoop...

Good news first; No Syrinx! This was a major answer to prayer. Also, my Chiari herniation has not increased which is great.

Not so good news; The Doctors stated that I have Tethered Cord Syndrome as well as Ehlers-Danlos Syndrome (joint hypermobility type) and Scoliosis. TCS to put it simply means that the spinal cord is attached at the thecal sac instead of being free at the base as it should be. This they believe is causing my Chiari as it "pulls" on the spinal cord/brain stem. They hope that if they perform the surgery to release the cord it may decrease my CM. If not, they said that they could do the decompression surgery, but this would cause even greater cervical instability. They would most likely have fuse my skull onto my spinal cord due to my EDS and I would never be able to turn my head again. Not gonna happen people! (Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, joints, muscles and ligaments.) They said that Chiari symptoms are greater in EDS patients as the cervical instability aggravates the CM herniation site more so than those without EDS and it causes severe pain itself.

They're having me start traction treatments daily for now to help relieve the pain and I have other tests to be done before they set up the surgery for my TCS. I also get to wear a nifty little Aspen Collar whenever I have to travel for any length of time to help with my cervical instability.
Enough of all that though...we did get to enjoy a bit of NYC and I can't thank my honey enough for being so supportive throughout the trip and for caring enough to create some special moments along the way. It was cold and damp as it should be this time of year, but Central Park was beautiful regardless! (Thanks Babe...)


So that's it in a nutshell. I'll be having tests done in the next couple of weeks and I will keep you all posted. Stay tuned for the rest of the story! Read more!

January 09, 2008

Four Days And Counting...

They say New York is the city that never sleeps...well, sounds like we'll get along just fine! In four short days we'll be headed to the Big Apple! The long awaited trip to The Chiari Institute has finally arrived! We've had a few hurdles to cross to say the least (thanks to my wonderful insurance co) but things are finally coming together!

I would like to thank each and every one of you for your prayers and support and your kind words of encouragement! I'll likely not be able to post for several days but will be back with a full report just as soon as I can!

Take care and God bless!

~Beth
Read more!

January 01, 2008

"Happy New Year!"

Here we are at the beginning of yet another new year. Many of us with CM are, and will be faced with many challenges, struggles and frustrations due to the nature of our illness. As the saying goes, we can let them make us bitter or allow them to make us better!

As for me, my New Year's resolution is to focus on the positives in my life. To do whatever it takes to overcome this ongoing battle. To hopefully learn enough along the way to be a source of strength to others.

Wishing you and yours a very Happy and Healthy New Year!
Read more!