re Banned book.

The fact that the trigeminal neuralgia assocation would be more concerned about their doctor than their mission is outrageous.

The irony is that I never talked about the malpractice case against Dr. Jannetta when I wrote the book.

It is time to do so now.

I had one procedure that worked but then the blood vessels grew back that were the cause of my pain. Not the artery falling against the nerve that is the Jannetta theory however.

I have a birth defect, a sturge-Weber syndrome (partial) identified by my neuroophthalmologist. It was easily diagnosed. I have a birthmark that turns redder with any emotion. Most birthmarks do not have a blood supply. The change in color was evidence of the extra vessels in my brain. It covered, exactly, the pained area.

Dr. Osterholm, the first neurosurgeon, cleared out as much of the extra vessels as he could. I awakened completely painhfree. Unfortunately left was a tiny red area, about the size of a dime. It was a sign some vessles were left. It grew and grew til the whole area was covered again; and the pain came back just like it had the first time. Suddenly, and without warning, a knife through my temple.

Dr. Osterholm had another surgeon do a procedure I was not happy about, feeling it was safer so I agreed to have it done. Dr. Martinez, his colleague, did a thermocoagulation rhizolysis, using a heated needle to try and burn the nerve to death.

Somehow instead of just getting the fifth nerve (trigeminal) he also got the 9th (glossopharyngeal - I had trouble swallowing) and the 7th (facial nerve). The whole left side of my face was numb, including my eye (the eye was a known side effects as was losing the feeling in the affected area. Losing the feeling in the whole face was not.) I also had no feeling or taste in the left side of my mough and tongue, from the facial nerve, a nerve he was supposedly nowhere near.

Three months later I was sent to see Dr. Jannetta - because he was the authority. His surgery was known as the Jannetta Procedure.

I will not go into item by item but I wanted to be an actress, that was why I had moved to NYC. With no feeling in my face I worried can my face be visibly injured?

I asked Dr. Jannetta, and his resident "Can my face be injured in any way?"
"I promise you" said Dr. Jannetta, "your face cannot be injured in any way."

I asked a number of times. My parents were there for this surgery. They asked too and were given the same promise. "Her face cannot be paralyzed."

I awakened in the NICU (neurosurgical intensive care). The left side of my face was paralyzed 100%.

Dr. Jannetta came to the NICU. He stood over me. 4 times he rubbed his fingers together next to my ear. "Can you hear this?" I could, each time. He said nothing about my face. And then he left. Literally. He left the country to give a lecture in Germany. I would not see him again until 8 weeks later, in his office.

At no time did he, or his residents in his absence, suggest physical therapy or anything that might help the paralysis to recover.

Instead I was discharged from the hospital with no instructions other than to keep a watch on my eye. I had lost all the feeling in it from the last procedure. Now it had no feeling and could not close. The jeopardy to it was great. So great that within a day of coming back to my parents home to recuperate I was at Wills Eye Hospital having to have the eye closed (sewn shut with sutures, called a tarsorrharphy)) in an emergency procedure. I was told that it would have to remain closed permanently. I had it opened a few months later against medical advice. I could not tolerate the way I looked, the paralysis was bad enough but the eye being closed added to the nausea quotient. As a result I was getting infections or drying out to a dangerous level, sometimes weekly. I have had to have repeated tarsorrharphies over the years.)

I looked disgusting but became even more disgusted and sickened when I read the hospitl chart I got from the hospital when I decided to sue.

Dr. Mark May, a facial nerve specialist, saw me after the surgery. He wrote in the chart that a defensive test on the facial nerve, taken BEFORE the surgery showed 44% impairment of my facial nerve. That was the loss of taste. No one ever asked me about that part of the problem from the last procedure. The impairment shown by the test was a good sign that paralysis could happen.

In addition I read Dr. Jannetta's research papers. He wrote reoperations, especially after rhizolysis) are much more dangerous to the patient. The chance of side effects were much higher and should be done with reticence, if at all.

He has written in his biography WORKING IN A VERY SMALL PLACE about letting a resident operate on a woman with a brain tumor. He did not think she should have the surgery: she was pregnant so the risks were higher. Nevertheless he told the resident to operate. The patient died on the table. When informed Dr. Jannetta writes he had to come into the hospital as he was not only not in the OR he was not in the hospital. In my case his son was having an emergency appendectomy at the same time I was in the OR. The evidence, records and surgical reports, indicate he did not do my surgery.

He lied about the risks, in fact in two depositions he said facial paralysis was "a major and common complication." On the stand he said it was "unknown". (The Pa. Superior Court his testimony perjurious stating: "We have little difficulty in concluding that Dr. Jannetta's testimony at deposition was different than, or inconsistent with, the testimony at trial." Levy v Jannetta, CCP Allegheny County, GD 81-7689; appeal -J. A370017/92 Levy v Jannetta et al, No. 00150 Pittsburgh, 1992. settled, 1995.)

He ignored a defensive pre op test.

It appears he did not do the operation. He never saw me again while I was in the hospital. He never suggested any kind of rehabilitation.

A number of years ago I saw him when I went to a trigeminal neuralgia association meeting.

"Excuse me, Dr. Jannetta." I said. "I wanted you to know because of the paralysis I have had to have 4 fscelifts, a browlift, we took off a part of my mouth, all to try and mimic age symmetry between the two sides." As I continued, "I had them open my eye against their advice but because if that have had to have many tarsorrharphies." His response was to pick up the newspaper sitting on the chair next to him. He turned away from me and put it up to his face and appeared to be reading it.

This is the man who is more important than the members of the trigeminal neuralgia association.

If they truly wanted to get the word out about trigeminal neuralgia, to members and the general population my book is (and was) the way to do it.
I am sorry that partisan self serving interests trumped their lofty mission.


(This is their publishing policy, sent to me by a board member. My book was solely about my experience with TN, the fight to live with it and struggle against it, and has a happy ending. It falls directly into the policy, but for Jannetta.)
The Board of TNA determined that there was a need among patients to have access to published works specifically related to TN and other facial pain which works are informative, timely, accurate and supportive. A Publishing Committee was charged with implementing that policy and specific works have been published by TNA which meet that policy and others are in production, including a book which will include numerous patients’ stories about their battles with TN. TNA also sells books which are not directly related to facial pain but which have been determined to be inspirational or of other interest to our patients. In the case of your own book, since it deals with the subject of TN, our decision whether or not to offer it for sale was based upon whether the book meets our own publishing criteria. We determined that it did not meet our publishing criteria and, therefore, we declined to offer your book for sale."