Re: Dr. Rosner

[Guest guest]

I thought I would reply to the group on this one since there seems to

be a lot of misunderstanding on this subject, and I am asked to answer

these questions privately quite often.

Dr. Rosner has been on the " chopping block " for his early and

pioneering work in the area that is now often referred to as " Chiari

0. " The latest controversy involved the governor-appointed state

medical board making a position statement that patients who have

minimal or no tonsillar herniation do not have Chiari. They also

state that surgery on these patients is unwarranted. As we all know,

there has been a lot of work done on this controversial topic (see

Milhorat's Chiari Redefined), and we still have a long way to go to

get full acceptance by the neurosurgical and medical community.

Dr. Rosner is actively practicing and continues to focus his work on

Chiari and related conditions. He is often cited for finding that a

subset of patients who are diagnosed with Fibromyalgia and/or Chronic

Fatigue Syndrome actually have cervical stenosis and/or hypoplastic

posterior fossa (Chiari). This subset of patients did not have the

" classical deeply herniated tonsils " and thus brewed the controversy.

The media misinterpreted this as a " hole in the head to cure

Fibromyalgia " instead of the fact that tonsil herniation is not sole

diagnostic criteria for Chiari, and does not correlate with symptom

severity.

Many of us had been given the " catch all " diagnosis of Fibro/CFS while

searching for an answer to our puzzling symptoms. As a true " Chiari

0 " patient, I applaud the work that Dr. Rosner (and many other Chiari

experts) has done and the fact that he is willing to take the risk to

get the word out there to try to help as many patients as he can.

I was asked to testify at one of the medical board hearings due to

being a Chiari patient with no herniation. I felt especially

compelled to speak for all of those who have minimal or no herniation,

we have had to open many closed doors and closed minds on the way to a

diagnosis. It was a personal attack for a medical entity to state

that I did not have Chiari, and that my life-changing surgery was

unwarranted.

I was fortunate to have the chance to travel to TCI twice while the

medical board was deciding what to do with Dr. Rosner's license, and I

am very proud of the work they are doing to further the understanding

of Chiari 0. They are doing such amazing things to get Chiari in the

spotlight (and Dr. B has become the " Clooney of Chiari " on the

Discovery Health Channel and TCI website videos).

A while back, Keesha had asked me to come up with Chiari 0 slogans for

her CafePress site for Cure Chiari merchandise. I decided that " Size

Really Doesn't Matter " was the best way to get attention. I also

liked " You Can't Discriminate if They Do Not Herniate. " Please check

out her store for great stuff. Proceeds go to ASAP, and Keesha has

done a great job with this site and her Chiari bracelets. Spread

awareness by wearing a tee-shirt, sending Cure Chiari postage on your

letters/bills, and wearing a purple " Cure Chiari " bracelet! Together

we can make the tomorrow we dream of become our reality today!

Have a great night, and take care!

(((( " Do your tonsils hang low, do they wobble to and fro " HUGS))))

Zipperhead 9-13-00 (Chiari 0) - Dr. Rosner, VP Shunt 8-2-05 (post-car

accident hydro/PTC) - Dr. Rosner