Tuesday, April 27, 2010


......is what the headline reads-
off the CALIFORNIA AP newswire

Helloooo... where are are you Heidi Evans? Isn't the NY Daily Rag interested?
Let's take a look-see at what it says...

FRANK ELTMAN, Associated Press Writer
― An expert on a rare form of brain surgery is backing a Long Island hospital under scrutiny after two of its top physicians were suspended for leaving a patient on the operating table, the hospital said Tuesday.

In a review commissioned by North Shore/Long Island Jewish Health Systems, UCLA neurosurgeon James Ausman called the Long Island hospital's Chiari Institute 'the finest center of its kind in the world.' A spokesman for North Shore, which released Ausman's review, declined to say how much the neurosurgeon was paid.

The institute draws patients worldwide who have a rare congenital brain defect called Chiari malformations, which can cause headaches, dizziness and other pain. Ausman cited the institute's experience and results with Chiari malformations, calling it 'a model for the care and treatment of any disease entity.'"


I can't wait to read what Ms. Evans will have to say about this. Surely this is important to her.

On another note:
Michael (now 13) needs decompression surgery soon. He's been out of school (being tutored) for 2 months with severe pain and dizziness. Surgery was recommended, but the extent and urgency are being determined with further testing that he's now undergoing, as Mike's chiari malforation is further complicated by a retroflexed odontoid.
He's having a swallow study, 24 hr. cardiac holter montoring and sleep study.
I will post the results as they come in.



lace1070 said...

Thanks for posting the great article about TCI ~ finally a win for TCI. I wanted to pass along this info to you about a chiari genetic study me and my family are participating in since your family has many that suffer from chiari. Some day we will have a cure. Hugs ~ Lace

Genetics of Chiari Type I Malformation

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 or chiari@chg.duhs.duke.edu. More information can be found on our website, http://wwwchg.duhs.duke.edu/diseases/chiari.html.

IRB #Pro00011231

Heidi Cope, MS
Certified Genetic Counselor
Duke University Medical Center
Center for Human Genetics

Allen Y. said...

Thanks for that article Jen, it seems to me that those who still support TCI are in the minority now.


All the best to your son and your family.