Sally's Brave Battle
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:
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
Sally Richards 2 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.
Marching Ahead
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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