Trip to the Chiari Institute: Part One: Miscommunication

Clarification: this article is being misquoted as saying that I went ahead with the surgery and was positive about it. One, I did not have surgery at TCI due to these obvious issues with them. Two I'm not positive about the outcome of this surgery in my case even though I had another excellent surgeon do it. That other surgeon has a much less invasive approach so if anything my results should have been better. However, the surgery did not live up to the hugely positive claims made by TCI. I was left in much the same condition as before.

Introduction: The Chiari Institute

As of today, 2007, there are only a hand full of neurologists and neurosurgeons in the United States who specialize in Syringomyelia (SM), Chiari Malformation, and related disorders. In Long Island, New York, there is a center, called The Chiari Institute, which specializes in treating these disorders. The Chiari Institute is so well known among Chiari and SM patients, that people just call it TCI, and you know what they are talking about.

The good thing about TCI is that they know these diseases, and they have a lot of practice with their specific surgical treatments. On the other hand, they are very busy and it takes a lot of patience to get an appointment.

Why I Went to TCI

I decided to go to The Chiari Institute because I had met and talked to two physicians who worked there, at the ASAP medical conferences over the last two years. In specific, I talked with Dr. B, who was a neurosurgeon that recognized my symptoms as a possible case of Occult Tethered Cord Sydrome (TCS).

I had been looking for the cause of my SM, and no experts so far were able to explain it (beyond conjecture that it is idiopatic, congenital, and uncurable). When Dr. B had me walk on my heels, and had my wife pull on my legs, the symptoms it elicited were a perfect match.

Thus, I decided to fly myself and my wife out to New York to meet with Dr. B.

Miscommunication: We've changed your Neurosurgeon

We arrived at TCI early on October 22, 2007. After sitting down with a nurse and giving a detailed symptom and treatment history, she told us that I will not be seeing Dr. Bolognese, because he is out of town for a conference.

What?

This was after I explicitly said that I was coming exactly to see this physician, and that I was to know ahead of time if this was going to be a problem. I even had confirmation via email that I was going to see Dr. B. I had just spent thousands of dollars to come to TCI and get fresh MRIs, so we were not happy about this.