To Rony's entry
in the Patient Directory
Throw me off the stage
here is Rony's photo during
treatment; here is his photo with Dr. Lederman;
here is a collection of poems Rony wrote during his AN experience
My story dealing with my AN
and my strong will to keep standing and smiling to my young players
Beethoven was deaf. I am not such a great musician as he was, and not completely deaf as he was, either. My daily work as a conductor and a principal of six different orchestras in Israel, for youth and adults, was not disturbed when I felt 7 years ago that I have some hearing loss and tinnitus. It did not worry me at all that my ear, my major musical instrument, was becaming weaker from year to year. I thought it is one of the professional accidents that happens during a musician's lifetime.
I am a former viola principal with the Haifa Symphony Orchestra, and it was very curious to me not hearing the usual nice sound when playing my viola, and more than that, not to hear the beautiful tone of Annetts violin, sitting weekly left to my side in our String Quartets rehearsals.
The story is known and hackneyed, it is needless to tell the details: CT, MRI, long meetings with physicians and neurosurgeons. I usually answered them that it does not matter what the threat to my life is according to their opinion, I didt want to lose my basic instruments as a conductor, which might happen after open surgery:
balance the ability to stand on stage steady;
hearing - to hear correctly all the sections in the Orchestra;
facial nerve to keep my face normal for the important gestures for the players;
coordination one of the important techniques for the conductors routine work.
I am 50 years old, and that time, in January of 1998, when I was told I have AN, was the first time I bought a PC and learned how to use the internet. Every night, with assistance of my brother-in-law who lives in LA, I was looking for a solution. I had decisiveness to do every thing, but not an open surgery. Soon, I learned the miracle word, one I had not heard before: Radiosurgery.
As all his former patients, I have found the person that showed me the way I can continue to live, do the things I love best, with optimistic view upon life, and with great hope that his new system (Fractionated Stereotactic Radiosurgery) is the right way for me.
Dr. Gil Lederman from Staten Island University Hospital was a light in the darkness. He was the only physician that really took care about my situation: he phoned me several times, encouraged me, explained basically his systems advantages and all procedures. You can not believe: a head of a department did not mind wasting his time and helped me and encouraged me in a period when every Neurosurgeon wanted only to cut, without talking about other alternatives.
Within 2 weeks I came with my wife from Israel to Staten Island, after my insurance approved me for FSR because my tumor size was 3.3 cm (in Israel till now we have only the one shot system, and the size limit for it is 3.0 cm). I did not come for a holiday, I still had the tumor that distressing me, but Dr. Lederman and his staff gave us the feeling they were really concerned, from helping us to find housing near the Hospital, to an invitation for Kabalat Shabat, the Friday meal, with Dr. Ledermans family.
2 weeks after the treatment, I stood on the podium again, conducting the Orchestra in 50th anniversary of Independence Day concert.
Dr. Lederman told me before the beginning of the treatments that according the statistics, 5% of the patients with AN get hydrocephalus after treatments... Eventually, 8 months after treatment, I joined this minority...
Dr. Lederman phoned me 3 times a day after I told him my hydrocephalus symptoms. He was insisting that I do a "shunt", but I could not find any neurosurgeon at the Rambam Hospital in Haifa that believed in the Radiosurgury system. They tried to influence me to do open surgery immediately, to get rid of the AN once and for all. I was afraid they won't agree to do the shunt because I was not their patient; I told this to Dr.Lederman and he answered directly: "Buy a flight ticket and come to Staten Island to do the shunt, Dr. Ehud Arbit will do it tomorrow at no charge".
At last, I convinced Dr. Jan Sostiel to do the shunt. Like his friends, he does not believe in radiosurgery, but he looked upon it as a challenge to operate me, because his idea is that some day in the future I will need him to do an open surgery I of course dont see it as an option at all.
Now I am 3 months after the shunt. I feel very good, all the hydrocephalitic symptoms are gone. According to the last MRI (from December 98) the tumor began to shrink 15%. I feel improvement in my hearing. I dont have any common symptoms that are known for AN. I stand on the podium and conduct with great confidence that Ive chosen the right way and a good person to do the best treatment.
In gratitude to Dr. Lederman and Staten Island, I have translated into English a collection of poems that I wrote about my AN experience. Some day, I hope to tour the USA with my Orchestra and to give a concert in NY. I am not Beethoven, but nobody will throw me off the stage. I feel a new energy for life in all my activities, and especially my music.
Rony Kess-El <kess-el AT barak-online.net>
24 Anna Frank St.
26234 Kiryat Haim, Israel
(7/99) The tumor is smaller 30% by volume. Also by length there is a remarkable change: it was 3.3 cm and now it is 2.7 cm. Also, I have found out that there was an "arachnoid cyst" at the center of my AN, as the Radiologist wrote in his first report. Now when the tumor died and began to shrink, there is no liquid to "feed" the tumor, and the cyst has vanished completely.
(2/00) Today we had a dinner meeting: members of the "Israeli club" of Lederman's FSR patients. Right now there are five of us, three with AN. The sixth one is going to Gil within 2 weeks. She also came to the meeting. She has AN 2.8 cm, and was booked for open surgery in Hanover. She found Ya'akov Almor's and my names in the Archive, she was talking to us, and after 2 days she changed her mind...
(7/00) I am happy to announce that I am going on 10th July with my Kiryat Bialik Youth Wind Orchestra to the International Music Festival in Ostende, Belgium. Recently, Gil Lederman was our guest and we had a meeting at my house of the the "Israeli club" of Lederman's FSR patients. I am medically great and hope it will continue so.
(12/01) The "Israeli Lederman Fan Club" is going strong. In August, we helped Dr. Lederman arrange Bar Mitzva for his son in Jerusalem and Tel Aviv. The media here in Israel have began to pay attention to FSR. Next week there will be an article in Yedioth Achronot, the greatest newspaper in Israel. I was interviewed for this article. I am committed to help other AN patients to find alternatives. Many people contact me because the Archive. So far, 13 people went from Israel to SIUH for treatment, with help of my efforts -- 8 of them with Acoustic Neuromas.
(2/01) Dr. Gil Lederman visited Israel this month, and gave three lectures about AN and FSR at hospitals in Tel-Aviv and Haifa. I helped to arrange the lectures. After one of them, the "Israeli Lederman Fan Club" met at the house of Dr. Elchanan Greenberg, head of ENT department at Carmel Hospital, Haifa.
This visit was a great victory for Israel's FSR patients. Four years ago, when I found out that I have AN, no Neurosurgeons recommended me to do FSR. The opposite: they were laughing at this treatment, saying that it is equal to magic and quackery. After I chose the FSR treatment in SIUH, I did not regret this decision. I achieved a shrinking of 50%, and avoided side effects!
Why victory? When Dr. Gil Lederman gave his lectures, there were many Neurosurgeons interested to hear him. They asked many questions, and suddenly they agreed that FSR is a real alternative, although they have less work to do. One of the lectures was in the same Hospital (Rambam in Haifa) where I went four years ago, when physicians were so skeptical about FSR -- and now they hosted me and Dr. Lederman!
Interest in FSR in Israel is higher than ever, after the biggest paper in Israel "Yedioth Achronot" published 2 great articles about Dr. Lederman and the FSR. Since my case, 15 Israelis chose FSR and went for treatments to SIUH, and there are many that wait for a date.
A real victory for all our friends!
Rony Kess-El <kess-elro AT barak-online.net>©
Back to Rony's entry in the Patient directory
Last Edited: Friday, November 22, 2002