Testing For Chiari: (by TCI)

(Testing that may be expected while at TCI)

"Diagnostic Tests:

3D CT Scan: A 3D CT scan is a scan that produces three-dimensional images of the patient's

vessels.

Cine MRI: A Cine MRI is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patient's chest to measure the heart rate. Each time your heart beats, the CSF is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of CSF as it is moving.

Computerized Tomography (CT scan): A method of body imaging in which special x-ray equipment examines different angles and is analyzed by a computer to show a cross section of body tissues and organs.

Magnetic Resonance Angiography (MRA): This test examines the blood vessels without the use of any x-ray. Electromagnetic energy that is released when exposing the patient to radio waves in a strong magnetic field is measured by a computer and reveals images of the vessels.

Magnetic Resonance Imaging (MRI): This is a test that reveals highly refined images of the body. This test obtains better images of tissue and organs by using strong magnets and pulses of radio waves to manipulate the natural magnetic properties in the body.

Medical Management: Not all patients diagnosed with CM require surgical treatment. Depending on the severity of the patient's symptoms and the results of a neurological workup, a patient may or may not be referred for surgical intervention. Even if surgical intervention is not indicated at the time of the workup, future surgery may be warranted if symptoms worsen."

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Chiari Related Conditions; (by TCI)

"Syringomyelia: Syringomyelia occurs when a tubular cavity (syrinx) develops within the spinal cord, caused by an obstruction of the cerebrospinal fluid (CSF) circulatory pathways.

*Approximately 80% of cases are the result of a Chiari Malformation. Other causes include
trauma, hemorrhage, infection and spinal cord tethering.

*An enlarged syrinx can give rise to painful sensory disturbances and paralysis of the
extremities.

Other Conditions: Other Chiari-related disorders treated at TCI include basilar invagination (see below), craniospinal instability, Ehlers-Danlos Syndrome (see below), intracranial and intraspinal cysts, tumors of the cerebellum, brain stem and spinal cord, spina bifida, spinal cord tethering, hydrocephalus (see below), and pseudotumor cerebri.

Basilar Invagination: Basilar Invagination is a protrusion of the upper end of the spine into the skull.

Ehlers-Danlos Syndrome(EDS): Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue. EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.

Hydrocephalus: Hydrocephalus is a buildup of CSF in the cavities of the brain.

Pseudotumor Cerebri: Pseudotumor Cerebri is chronically raised pressure in the cerebral spinal fluid." Read more!

Chiari and Pregnancy; (by TCI)

"Not all Chiarians are created equal. It is important to see a specialist in the field to properly evaluate how to deliver if you have Chiari Malformation/ Syringomyelia. The presence of SM may require C-section rather than vaginal delivery.

Patients with Posterior Fossa Decompression who are pregnant: Patients with successful decompression or very minimal Chiari symptoms have less risk when an epidural is part of the plan. If prolonged labor occurs this can put more pressure on the central nervous system (brain and spinal column) and the option for a C-section should be considered. If you have had a successful decompression a vaginal delivery should be considered. Some patients are under-decompressed, so this rule is only true for successful PFD's. In order to know if you are a successful decompression you need an MRI of the brain and some resolution of symptoms.

Patients without a Posterior Fossa Decompression and no SM: They are usually monitored closely. Anepidural can worsen CM/SM if the epidural is performed too deep (goes past the dura). Also a vaginal delivery can make CM worse if you have a syrinx.

Patients with NO decompression and with SM: The size of the syrinx matters. An open MRI is recommended at 35 weeks gestation. If the MRI reveals a larger syrinx or neurological signs are increasing, a C-section is indicated. If one is stable and the syrinx has not changed, you may proceed to the 40th week of pregnancy and be careful with the epidural as stated above.

Of course, if you are disproportioned (the baby is larger than your birth canal) one must go C-section. Usually during pregnancy many patients feel better and some of your symptoms can improve. Every patient is different and on should have an evaluation prior to delivery."


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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!

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!

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!

"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!

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