Flying to NYC
Once a Week for Three Months
My name is Julia Scott Tew, and I am 27. I was diagnosed in 4/95 with bilateral AN's, each approx 3 cm in size. I was all lined up to have my invasive surgery in KC, MO with Dr. Thedinger, one of the 'best' who trained at the House Institute. Two weeks before the surgery, at a pre-surgical checkup, Dr. Thedinger was suprised at how I seemed to have 'gotten better'. He was unable to explain the pheomenon, and my surgery was postponed. My family knew it to be Jesus' answer to our prayers. It made me realize that surgery absolutely no way could have been God's intention for me (I had been wondering!), and I never went back to KC!
Four years passed and I ignored every headache and every sign there was something hurting in my head until I could find a better doctor to consult. My research wasn't as fruitful as it could be -- I was 22 years old, rapidly losing my hearing, and not as able to Net search as I am now. My biggest hurdle though, was I just wanted to IGNORE my illness. Wasn't hard -- even with two golf ball sized tumors, I had very few symptoms outside of hearing loss. But I was stubborn about not going back to those doctors who insisted on surgery. They would never even discuss other options -- even after I begged for alternatives (can you say 'malpractice?'). I have since coined the joke... Asking a surgeon if you need surgery is like asking a photographer, "Do you think I should get my picture taken?" I do find it interesting that, upon dianosing AN, your ENT only refers you to a surgeon, who of course, only discusses surgery-- with him -- as your only viable option.
Well FINALLY we heard thru a friend of a friend about FSR at SIUH early in 2000. We had my films sent Dr. Lederman and arranged to consult and begin treatment right away. There was never any question whether or not this was the right thing. After four years of praying, I KNEW it was the ONLY thing! I admit my ignorance was my fault for ignoring the problem and not doing enough research for treatment after I was first dianosed. I only knew enough to ask God to be in charge of my treatment. He brought me to the people at Staten Island University Hospital.
Since they were treating both tumors at once, we had to stretch it out quite a bit. I had to split the week between classes at the U of A and flying to NYC to have my once a week radiation treatments... for three months! I was able to do a lot of touristy stuff during those visits. Aside from the constant nausea from that 'metallic' taste, I felt pretty good. Headaches were rare. Mostly I was just a little thin and tired from all the travel. After my last radiation treatment, Dr. Lederman (with whom I had a great rapport) took me and my mother, who went with me for the last visit, to his home, broke out the champagne and cooked us fresh salmon on the grill -- and he held my hand as we prayed our prayer of thanks. AND it wasn't even my first visit to his home. He and his staff did everything they could to make me feel at home on every visit.
About 3 months after the treatments were over, around May of 2000, I was overcome with horrible side affects. I lost the motor skills to walk or type. My lips lost feeling and smiling was difficult. I couldn't swallow well or even sign my own name. A local neurologist put me on Mecclazine and steroids (I didn't want to have to fly to NY in that condition) and ordered me to stay on bed rest. I was like that for months while my parents took care of me but gradually regained mobility and independence. I consider myself to be fully well now. Eating a healthy diet (I'm a health food fanatic these days) and getting plenty of excercise make me feel my best. I'm feeling great and have been living a full life for well over a year. In fact, I got married three months ago to a man I met at a wedding last summer. Our favorite activities include weight training, aerobics, camping and gourmet cooking. I write poetry and short stories in my free time.
My follow up MRI's indicate 'cessation' of growth and I feel so good that I have begun looking for a job. Coincidentally, my degree is in Advertising/Public Relations. Although my hearing is completely gone, we do have hope the nerves will repair themselves over time. My family and I are learning sign language and I have become an enthusiastic activist for the Deaf/Hard of Hearing community. As far as how it will affect my career (because yes, I will always be affected -- for the better -- by all that has happened) I am hoping to use my 'third eye opening' to non-verbal communication towards my advertising perspective.
But I am always interested in information about homeopathic or holistic medicine for people with NF2. I have become a believer in herbal remedies, especially those found in fresh vegetable juices. If anyone has a story to share about that or any questions, please write me!
Julia Scott Tew <julie-tewlie AT cox-internet.com>
'27 going on 17' :)
Last Edited: Tuesday, August 12, 2003