Last Updated: 10/25/2000
My saga began when I was 35 years old, just 12 years ago. I had a strange sensation on the right side of my face like something was there that shouldn't be. That's how I described it. It didn't hurt, tingle or feel numb. After several weeks of this sensation I went to a neurologist. He tested me and misdiagnosed me with a stroke. There was this spot that appeared on my MRI and that's what I was told. I didn't look like a person who had, had a stroke. I went to other neurologists who all concluded as the first that it was definitely a stroke.
It wasn't until 6 years later when my eye doctor told me to keep on looking for the reason because something was wrong, but he didn't know what.
I went in for a routine laparoscopy to remove a cyst on the ovary. The surgery went fine, but when I was about to go home I had a seizure. Again the doctors did tests and determined that I had, had another stroke.
Finally, I saw a new neurologist and he told me you don't need a neurologist you need a neurosurgeon. I went to see three neurosurgeons. When I met Dr. Kalmon Post (Mt. Siani Medical Center in NY) I knew he was the doctor I was going to trust my life with. I was diagnosed with a gbm. As soon as I was diagnosed my brother-in-law, Al Musella, started researching on the computer, went to medical libraries, and read tons of medical papers on gbms. The prognosis didn't look promising. My whole world collapsed. My two twin girls were only 8 years old at the time I was diagnosed. My two sons were 14 and 12.
My first surgery was on January 13, 1993. I then began the rigorous 6 weeks of radiation. After the 6 weeks my tumor was still growing. The tumor, I was told, was too large for any clinical trials or to do stereo-tactic radiosurgery.
My husband's friend told him about Dr. Gil Lederman at Staten Island University Hospital. My brother sent us articles about Dr. Lederman. My brother-in-law who did tons of research also suggested we see Dr. Lederman. He did 4 sessions of fractionated stereo-tactic surgery with cisplatin. This was in June 1993. In September 1993, I had my second craniotomy to remove necrosis. The stereo-tactic radiation was a success.
My brother-in-law found a pain-free treatment that seemed to have good results, based on the work of Dr. Couldwell and Dr. Selker.
However, we had trouble finding a doctor who would agree to prescribe it.
Finally, we found Dr. Mark Levin, from Staten Island University Hospital (Now at Brookdale Hospital) who agreed to let us try it. In December 1993, I began taking 200mg of tamoxifen a day.
In February 1994, a shunt was put in my head so the doctor could remove the fluid from my brain without having to do surgery. In April 1994, the shunt was removed. Then in May 1994, I had my 4th and last surgery.
This type of illness is difficult to go through by yourself, but I was lucky to have a wonderful husband, family, friends, and excellent doctors to get to where I am today. I am still on Tamoxifen. My brain scans have not changed in over 3 years. I can drive and take care of my family. People who meet me do not usually notice anything wrong, and I feel great.
