If you know of a child or have a child with this medical condition contact Shriner's Hospital if you are being denied care or are unable to obtain it for the child.

The Chiari Institute
The Chiari Institute 
is the world's first comprehensive, multidisciplinary center
for the management of patients suffering from Chiari malformation, a rare structural condition that affects the cerebellum; syringomyelia, a chronic disease of the spinal cord; and related disorders.

Chiari Malformation Clinic
Guided by the general mission of the University of Missouri Health Sciences Center, the mission of the Chiari Clinic is to provide the highest quality of care to those persons with Chiari I Malformation, to provide current information and education to persons with the disorder, and to conduct research into the various aspects of caring for persons with the Chiari I Malformation. 

Kaiser in particular has gone to extreme lengths to avoid diagnosing Chiari Malformation, refusing to provide Ciné MRIs, the simple gold-standard diagnostic test widely required by Chiari experts around the nation. And when faced with clear, irrefutable radiographic evidence of the malformation, Kaiser claims that the findings are incidental and irrelevant. Thus patients have to live with the deeply disturbing awareness that the HMO they have paid to care for them has no intention of providing necessary care at all.

This web page is here to assist the Chiari-1 Kaiser patients that are being denied medical care.  Links to information on this condition are in the menu section to the left.  We encourage you to participate in  sending us an email with your experience with the Kaiser system. 

If you would like your story posted on the Victims page be sure to put that in writing otherwise all information will remain confidential.  We need to crunch the data here folks to see what the common Kaiser denial of care pattern is.  We can only accurately do it with your assistance.

As with the Lyme victims we will see what we can find in the way of attorney's that may be interested in representing you but it does not appear that any will be willing to take on these cases any time soon. 

Representing a patient with this condition is very expensive because of the complicating factors.  So far it has been next to impossible to locate one that truthfully intends to follow through. We have had plenty that have said they would represent this group of patients but none has followed through yet. 

Keep in mind though as with Lyme and other victim segments it will not be easy going.  Kaiser has more money than the very few states remaining that they are allowed to set up shop in. 
Because of that even government is leery of taking them on in a court of law.  Quite frankly, Kaiser can and will out spend them and openly gloats about it.  It is going to be an up hill battle but we all are going to beat them at their own game. We are doing it by telling the truth and presenting the  honest facts.

For Patients Seeking Help and for the Education of Kaiser Permanente Doctors the following contacts and those found in the left hand column are important:

The Chiari Institute is the world's premier site for managing Chiari Malformations.
Drs. Milhorat and Bolognese have the most experience of any Chiari-knowledgeable neurosurgeons, and have performed the most Chiari surgeries of  anyone, anywhere -- 250 to 300 surgeries a year. They specialize in complicated cases that other Chiari surgeons cannot solve. More than half of their patients come to them for re-operation because of failed Chiari surgery elsewhere. 

Approximately 90 percent of the Institute’s patients come from outside the New York metropolitan area. They represent all 50 states as well as 19 foreign countries. 

Drs. Milhorat and Bolognese have exclusive use of Color Doppler Ultrasonography for obtaining intraoperative measurements of CSF volume and CSF flow dynamics that can indicate if a Chiari decompression surgery is successful. No one else in the world has this tool for Chiari surgery.   Also Drs. Milhorat and Bolognese discovered the association of Chiari-1 Malformation and Ehlers-Danlos Syndrome, a significant comorbidity that requires alteration in the surgical protocol to prevent serious and dangerous consequences. There is no Chiari-EDS medical literature available yet, since Drs. Milhorat and Bolognese are writing the first paper about it with cooperation from the CDCs in Atlanta, GA.

Thomas Milhorat and Paolo Bolognese at The Chiari Institute in NY at:
516-570-4400.

Second best nsg list (no order):
David Frim in Chicago,
Ulrich Batzdorf at UCLA,
John Oro' in Columbia, MO,
Ghussan Bejjani in Pittsburgh,
Richard Ellenboggen in Seattle
Jorge Lazareff at UCLA,
Barth Green in Miami
Daniel Heffez in Indiana,
Arnold Menezes in Iowa