tag:blogger.com,1999:blog-42929500019747654962011-11-27T18:54:42.041-05:00Created as a source of support to those whose lives are affected by Chiari Malformation, Ehlers-Danlos Syndrome, Tethered Cord Syndrome, Syringomyelia and other related disorders.Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.comBlogger161100tag:blogger.com,1999:blog-4292950001974765496.post-44843408728831617562008-09-30T17:00:00.000-04:002008-09-30T21:16:18.373-04:00

Part I:"How long can I expect to be hospitalized?Posterior Fossa Decompression/Revision: 5-7 daysCraniocervical Fusion: 6-8 daysVentical 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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-38931119054634701712008-09-28T17:38:00.001-04:002008-09-30T21:18:28.382-04:00

"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 guideduring decompressions.- The purpose of a posterior fossa decompression is to restore normal circulation of CFS.Shunt: A shunt

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-9920825318225293012008-09-23T15:20:00.000-04:002008-09-30T21:17:11.590-04:00

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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com0tag:blogger.com,1999:blog-4292950001974765496.post-7337555030376472132008-09-20T20:45:00.000-04:002008-09-30T21:17:27.341-04:00

(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'svessels.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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-4984405894167242172008-09-18T20:55:00.000-04:002008-09-30T21:17:50.978-04:00

"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 includetrauma, hemorrhage, infection and spinal cord tethering.*An enlarged syrinx can give rise to painful sensory disturbances and

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com0tag:blogger.com,1999:blog-4292950001974765496.post-43194091269558128412008-09-15T18:48:00.000-04:002008-09-30T21:18:12.537-04:00

"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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com2tag:blogger.com,1999:blog-4292950001974765496.post-64051931828034724742008-01-27T09:50:00.000-05:002008-02-05T21:44:26.758-05:00

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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com2tag:blogger.com,1999:blog-4292950001974765496.post-89141788237435216142008-01-19T10:25:00.000-05:002008-01-19T11:32:40.893-05:00

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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com2tag:blogger.com,1999:blog-4292950001974765496.post-27883925178022460832008-01-09T21:33:00.000-05:002008-01-09T21:53:39.692-05:00

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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com2tag:blogger.com,1999:blog-4292950001974765496.post-52042733731114061742008-01-01T21:54:00.000-05:002008-01-09T21:56:26.145-05:00

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

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com0tag:blogger.com,1999:blog-4292950001974765496.post-63190165286656259242007-12-22T10:09:00.000-05:002007-12-23T19:57:22.114-05:00

"Christmas night. As the evening falls like the curtain on a long-awaited show, I hold my children, just one last time this season, in the warm bath of the Christmas tree lights.And I wonder.Did the Yuletide parties and gatherings fill them with a sense of family? Did the Christmas rituals unite them in a shared commonality with their fellowmen? Did the music of Christmas heal them of a cynical

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-28567095165350818032007-12-13T21:25:00.000-05:002007-12-13T21:48:46.378-05:00

Many of you might have heard the country singer Rosanne Cash, daughter of the country legend Johnny Cash, recently underwent decompression surgery for Chiari. She is reported as doing well and is looking forward to getting back into the recording studios soon! The story of her success is truly an inspiration to those of us with CM.Please visit the following link to read her story: http://

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com0tag:blogger.com,1999:blog-4292950001974765496.post-85053249476670288192007-12-08T09:57:00.000-05:002007-12-08T21:59:42.312-05:00

As a member of the WACMA message board, I've read several posts from other members located in Central Florida who were interested in knowing if there is a Chiari support group here locally. I too was looking for one, found none, so I decided to start one myself!You can find it under Yahoo Groups as Central FL Chiari Support Group or simply click on the Yahoo icon at the bottom of this page to

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-65546669328834928622007-11-27T18:49:00.000-05:002007-11-27T19:38:54.557-05:00

Thanksgiving is over and that can only mean one thing...CHRISTMAS IS HERE! I must admit, I am a die hard Christmas fanatic, but it's all good. I know I'm not alone on this one!Many of you on the message boards have asked where you can purchase Chiari Gifts. I too was interested but never really found much online so I created a shop myself. I will be donating a portion of the proceeds to Wishes

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com0tag:blogger.com,1999:blog-4292950001974765496.post-53320636060586261362007-11-19T20:43:00.000-05:002007-11-25T00:20:52.059-05:00

With Thanksgiving just around the corner, I thought I would post this evening while I actually had the chance!There are days when I must admit that I feel anything but "thankful". It's so much easier to make a list of the negatives it seems; work, bills, finances, debt, traffic, kids arguing, family/relationship dynamics, the paper boy that keeps throwing your newspaper in the puddle!All of these

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1tag:blogger.com,1999:blog-4292950001974765496.post-668642079946718632007-11-12T20:14:00.000-05:002007-11-12T20:22:57.137-05:00

Years before I was diagnosed with CM I'd been experiencing symptoms such as; blinding headaches, severe pain in my neck, fatigue, dizziness, numbness in my face, etc. I was led to believe I had everything from pinched nerves to chronic fatigue syndrome.Mother's Day of 2005 I woke with a feeling of sheer panic. I had lost all feeling on the right side of my body. Taking into consideration my

Bethhttp://www.blogger.com/profile/09425775282365858879noreply@blogger.com1