For Sally Richards, the 25-year battle with brain and spinal tumors began in high school when she was diagnosed at age 15. She has Neurofibromatosis 2 (NF2), a complex genetic condition that causes non-cancerous tumors to grow along the central nervous system, in her case, on the brain and spinal cord. It also causes various symptoms, depending on where the tumors grow.
Because Sally’s mother and sister had been diagnosed with NF2, and it is often inherited, Sally's doctors decided to do an MRI when she was 15. The results showed that she had bilateral acoustic neuromas (ANs). ANs are tumor growths along a nerve that leads from the ear canal to the brain. Her tumors were growing on both sides of her head.
A Lifetime of Struggle
As her disease progressed and the tumors grew, Sally found it more and more difficult to perform her usual activities. Her disease has forced her to live with symptoms and side effects of treatment, such as:
- Total hearing loss
- Double vision
- Balance issues
- Bilateral facial paralysis
- Lower back pain
- Ringing in the ears
- Short-term memory issues
- Permanent nerve damage on her lower left leg
It has been a tough road for Sally, but she has never given up.
Finding and Choosing the Best Doctors
In 2009, Sally found that she was experiencing extreme confusion, which she describes as having a terrible head cold. She knew she would probably need another surgery because she was sure her confusion and other symptoms were due to a growing tumor. A friend of Sally’s, who works at Northwestern Memorial, was able to help her find a surgeon, Andrew J. Fishman, MD.
Things went well from the start. Sally says “Dr. Fishman was wonderful and accommodating. He knew how important it was for me to communicate with him directly, so he typed every response to my questions and gave me time to read them. He is professional and compassionate. He’s extremely knowledgeable and informative. From the first appointment, he has gone above and beyond to keep our lines of communication open, and he has treated me as a valuable member of my healthcare team.”
Sally decided to go with Dr. Fishman, along with Bernard R. Bendok, MD, and Hunt H. Batjer, MD, as her surgical team because she felt she could trust Dr. Fishman and his abilities. But she did not come to that decision easily. She took her time and did a lot of research. She recalls the moment when she knew she had found her surgeon.
“In April 2009, I was speaking to an NF organization about my experiences with Dr. Fishman. At that time, I had not yet decided who I was going to go with, but I knew Dr. Fishman was a strong candidate. During my presentation, I started to talk about the trust connection between me and Dr. Fishman, and it was as if a light went on inside my head. It was then I realized I’d found my surgeon.”
The Northwestern Memorial Experience
In July, 2009, Sally had surgery to remove as much of her brain tumor as possible. She went in knowing that there were some serious risks, but she found great comfort in her faith and in the fact that her team of doctors was so experienced with NF2.
Drs. Bendok, Fishman and Batjer were able to remove most of the brain tumor, and thanks to their skill and expertise, Sally was back to normal in no time. Five days after her surgery, on a Sunday afternoon, Drs. Fishman and Bendok came to her room to release her. Within weeks she was back to doing the things she loves.
The doctors at Northwestern Memorial took the time to perform an MRI of her entire spine and check her kidney function before surgery. They check her kidney function each time she has an MRI, and they always check her entire spine—not just the parts they believe to be affected. Their comprehensive care and multidisciplinary approach helped put her mind at ease. And, with great support from her family and friends, fellow NF2 comrades, and the doctors she trusted her life with, she is doing better than she’d ever expected.
Bringing Back Her Smile
Prior to her surgery, Dr. Fishman told her there was a 50 percent chance he could save her facial nerve, whereas other doctors had given her a zero percent chance. Fortunately, they were able to preserve her nerve, and after facial reanimation surgery performed by Dr. Fishman and his partner Douglas M. Sidle, MD, Sally is able to smile again. A week later, Dr. Sidle also implanted platinum eye weights to help alleviate dry eye irritation, which is common with NF2. “I am very happy with the outcome of all three surgeries,” she said.
Sally knows that though her surgeries were successful, her battle with NF2 will continue. She’s so happy with her experience at Northwestern Memorial that she is spending some of her time working to have an NF center at the hospital. She has also joined the NF Endurance Team that raises money for the Children’s Tumor Foundation. In fact, she participated in the Chicago Rock'n'Roll Half Marathon in August, 2010 to raise funds for the organization. She hopes to get the word out about NF2 and to raise money to find a cure.
Sally would like to make sure that everyone she’s worked with at Northwestern Memorial gets proper credit for what they’ve done, but she knows she can’t possibly name every single person individually. However, she’d like to thank the nurses and staff and mention the Northwestern Memorial physicians who were part of her team along the way.
- Hunt H. Batjer, MD, neurological surgeon
- Bernard R. Bendok, MD, neurological surgeon and neuroradiologist
- Andrew J. Fishman, MD, neurotologist and otolaryngologist
- Michael Y. Lee, MD, internist
- Robert M. Levy, MD, PhD, neurological surgeon
- Bahram Rahmani, MD, pediatric ophthalmologist
- Jeffrey J. Raizer, MD, Director, Medical Neuro-Oncology; Co-Director, Northwestern Brain Tumor Institute; and Associate Professor of Neurology
- Douglas M. Sidle, MD, FACS, Assistant Professor, Facial Plastic and Reconstructive Surgery
Sally says, “I'm extensively involved in the NF2 community, and I am thankful for each person who has helped me and others and for the strength of collective teamwork at Northwestern Memorial and elsewhere, as they are truly making a difference in the lives of people with NF2.”
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