"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!

September 30, 2008

FAQ about Surgery & Hospitalization (By TCI)

Part I:

"How long can I expect to be hospitalized?
Posterior Fossa Decompression/Revision: 5-7 days
Craniocervical Fusion: 6-8 days
Ventical Peritoneal Shunt Placement/Revision: 1-2 days
**Above are estimated lengths of stay without complications**

When can I shower? Wash my hair?
You may shower at any point as long as you do not get surgical incisions/staples/sutures wet 48hrs after removal. You may wash your hair with a gentle shampoo 48hrs after staple/suture removal.

When will staples/sutures come out?
New incisions: 7 post operative days
Old surgical incisions: 9-11 post operative days
EDS pts: timing varies; you will receive specific instructions upon discharge.
**You do not need to remain in the hospital for staple/suture removal, arrangements for removal can be made with your physician at home, unless otherwise instructed**

When can i get out of bed?
The day after surgery you should be out of bed and sitting in the chair a minimum 30 minutes 2-3 times that day, increasing your time out of bed daily until discharge." Read more!

September 28, 2008

Surgical Procedures for Chiari (by TCI)

"Surgical Procedures:

Posterior Fossa Decompression: A posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone.
- The surgeons at the Chiari Institute are the first surgeons to use color Doppler as a guide
during decompressions.
- The purpose of a posterior fossa decompression is to restore normal circulation of CFS.

Shunt: A shunt is a tube which drains spinal fluid from one space to another body cavity.

Lumbar Puncture: A lumbar puncture or "LP" is a procedure whereby spinal fluid is removed from the spinal canal for the purpose of diagnostic testing. This is also known as spinal tap.

Cranioplasty: The operative repair of a defect of the skull.

Craniocervical Fusion: Craniocervical fusion is performed for spinal instability. The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine."

(The surgeon at TCI suggested that Craniocervical Fusion may be an option for me due to my spinal instability. He did state though however, that I would not be able to turn my head again. Some readers have stated that the have "some" movement since the surgery, but it is very limited. You may want to keep this in mind when making a decision in regards to CF surgery.) Read more!

September 23, 2008

The Chiari Institute (TCI) Experience...

Hey Everybody! I'm taking a break from "clinical posting" to answer some questions. I've been asked by several of you since my return from TCI, what it's like and what to expect. Many of you were so kind to fill "me" in before I went, so I'm passing on the favor!

From the get-go: If flying, book ahead as soon as possible (2 months if able)...saved me a bundle! I flew into LaGuardia Airport which was about a 30 min. drive to North Shore/TCI. I used the airport shuttle which was quite a bit cheaper than the regular taxis...about$40.00 compared to $50+.

As far as hotels, the ones offered on TCI's website are great and offer discounts, BUT the prices on the site have not been updated and are about $20 more now at some hotels.
Be sure to ask when you reserve your room. Ollie's taxi service was great and they were so nice. Ask for Bob,#51. Tell him the FL TCI couple sent you! LOL!!!

The day of testing is not bad at all. Plan on 3-4 hours that day depending on what tests have been ordered. Everyone was great!

The next day (at TCI) plan on being there all day (it's worth it...honest!). I arrived just at 9:00am and didn't leave until 7:00 pm that night. The time scheduled to see your doctors is not necessarily the time you'll actually see them. Tuesdays are big surgery days. They ask you to stay there throughout the day as the doctors are in and out. First they have you fill out more paperwork...and even take your picture, so SMILE! :) The Marketing Dir. then comes out to meet you and is great. You'll be given a nice canvas TCI bag with goodies like; Patient Education Binder...Nice Daily Planner...TCI Info...and a cute little squeezy stress ball made to look like a little brain! LOL!!!

Next the Nurse Practitioner calls you back and goes over your complete medical history. You'll also be asked about your family history (even cousins, aunts, uncles, etc). The more info you have the better! That's how they came to find that my TCS may be inherited from my Dad (I was the first case they have had like that they said...they were excited...not that "I" was! After that, you'll be waiting to see the docs. They have nice personal waiting spaces with flat screen TVs...a computer room with internet service as well as all their videos (even ones not on the website)...and they have a nice area for refreshments (bagels, pastries, cheeses, coffee, juice, etc.) They have a microwave as well to use. There are no restaurants near by to walk to, but they provide numbers of those who will deliver. The doctors were wonderful and thorough...they do a complete neuroexam and are a wealth of information. I took a small recording device so I could record all they said to me (I knew I'd forget stuff...thanks to Brain Fog! LOL!) They were perfectly fine with that. Dr. Chan even gave me his email address if I have questions later and said he'd call me back in return! I'm now waiting for the written report which takes some time I hear (2-6 wks at times). Well that's the highlights! Sorry so long, but I know a lot of you want to be as informed as you can be...just as I was! Read more!

September 20, 2008

Testing For Chiari: (by TCI)

(Testing that may be expected while at TCI)

iagnostic Tests:

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

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."
Read more!

September 18, 2008

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

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!

September 15, 2008

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."

Read more!

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!