Last fall, when Amy Most felt something odd below her rib cage “like a little hiccupping going on inside,” it was such a vague sensation that she simply dismissed it. Even after it happened six times in three weeks.
But when the Brady, Neb., mother of four sensed that same strange feeling again, this time triggering a twitching in her right arm and shoulder so severe she couldn’t keep still, she didn’t ignore it anymore.
Because it was a symptom she couldn’t repeat, her doctor suggested perhaps it was Amy’s muscles tensing after too often lifting and carrying her then-3-year-old son, Lukan.
“At that point, I wasn’t even sure what I was thinking,” Amy recalls. “MS (multiple sclerosis), maybe.”
The 39-year-old went on with her life until, as she was walking through her home, “all of a sudden, I felt like my right foot dropped, and I tripped. That’s when I remembered, ‘that’s not the first time this has happened.’”
The tripping was followed by an acute weakness in her arms and legs. This time, Amy and her husband, Nate, were advised to see a neurologist in North Platte.
“They took blood tests and did an MRI (magnetic resonance imaging) scan,” Amy says. “That’s when they found the brain tumor.”
Brain tumor. Two words that kept repeating in her mind.
Two words that changed everything.
It was September 2007, about the same time that Amy Most was feeling the first odd sensations in her abdomen, when Michele R. Aizenberg, MD, was moving into her new office at the University of Nebraska Medical Center (UNMC).
A graduate of the University of California-Davis and St. George’s University School of Medicine, Dr. Aizenberg brought with her experience as an intern in general surgery at Brown University School of Medicine, a resident and later chief resident in neurological surgery at The George Washington University, clinical fellow in the surgical neurology branch at the National Institute of Neurological Disorders and Stroke, and as a fellow in the Department of Neurosurgical Oncology at The University of Texas M. D. Anderson Cancer Center.
An assistant professor in the neurological surgery and oncology sections at UNMC and a neurosurgeon at The Nebraska Medical Center, one of Dr. Aizenberg’s special interests is primary and metastatic (spreading or secondary) brain tumors.
She came to the medical center not only to perform surgery and take care of patients, but she also came to establish a comprehensive program to treat brain and spinal tumors. Taking a multidisciplinary approach, she works closely with radiation oncologists, medical oncologists, neuroradiologists, neuropathologists, neuropsychologists and neurologists.
“The goal is to go beyond neurosurgery to provide everything else necessary for the care of these patients,” she says. “All the pieces of the puzzle have been in place here, but organizing them into a formal, comprehensive program that can grow into something which can provide cutting-edge patient care, clinical trials and research is new.”
It’s an opportunity that complements her interests. “Rarely do you come into a place that has such great resources and the support to develop a program like this.”
Married to engineer and businessman Shervin Ansari, Dr. Aizenberg says her work is three-fold: clinical practice, building the tumor program and developing research projects.
The majority of the neurosurgical cases she takes on are tumor cases and are often inherently complicated, some involving tumors in or within close proximity to the “eloquent areas” of the brain that control speech, motor and sensory functions.
Among the techniques she employs is “awake brain surgery,” where the patient is awake during portions of the operation in order to respond to questions and stimulations.
The patient is given anesthesia and put to sleep for the craniotomy, the opening when the incision is made and the brain is exposed, then awakened. This enables Dr. Aizenberg to know in a more precise way, than can be learned with pre-operative imaging and neurological/neuropsychological testing, where she is operating in relation to the eloquent areas of the patient’s brain.
“My goal is to prevent injury and remove the maximum amount of tumor while allowing the patient to maintain function,” she says. “Awake brain surgery is a way to help prevent loss of function while doing what I need to do neurosurgically.”
Dr. Aizenberg is currently the only neurosurgeon at the medical center who performs awake brain surgery. It’s not a new technique, but it is not common.
“I performed them during my residency and also during my fellowship. That’s where I developed the technique I feel comfortable with because it provides the best conditions for the patient and testing.
“I like them because I’ve been trained to do them. It’s an option for me and it’s another tool I can offer my patients.”
Patients who would soon include a very anxious woman named Amy Most.
Amy reacted to the diagnosis by denying it.
“I felt it couldn’t possibly be real, even though I saw on the MRI what the neurologist was talking about. Even if it was true, I thought we’d just take it out and it would be done.”
The neurologist recommended that Amy and Nate come to Omaha and meet with a neurosurgeon at UNMC. An appointment was scheduled, and when the day came, Amy and her husband set out on the four-hour drive to Omaha.
While en route, however, they got a phone call from the medical center “saying they have a neurosurgeon who is starting a new brain tumor program and they think she might be a real good fit for me,” Amy recalls. “But they wanted to reschedule my appointment for the following week.”
Amy said no; that they were already halfway to Omaha. The caller said an attempt would be made to schedule a meeting with Dr. Aizenberg that same day.
“It was hard for me at that point, with all this new scary stuff coming at me,” she says. “Even though I didn’t know him, I had my mind set on the first doctor as my neurosurgeon. To have that suddenly changed was disconcerting.
“But it was a good thing.”
The couple met Dr. Aizenberg and spent two hours asking questions and getting answers.
“We were very impressed,” Amy recalls. “She clearly knew what she was doing.”
Prior to the meeting, the little Amy knew about brain tumors had come from a pamphlet provided by the neurologist in North Platte. She learned much more from Dr. Aizenberg.
“She told me she believed it was a primary tumor, one that hadn’t metastasized,” Amy recalls. “She said it was close to the motor strip but didn’t think it was on it. I didn’t understand how important that was.”
Amy listened intently and found Dr. Aizenberg to be very reassuring.
“She didn’t sugar-coat it. She gave us the facts,” Amy says, “with hope in her voice.”
Amy’s surgery was scheduled for Nov. 20. The day before, she underwent the functional imaging and other tests that help pinpoint her tumor in relation to the surrounding brain. Although awake brain surgery had been explained as an option, “I was still hoping I wouldn’t have to have it.”
The pre-operative testing, however, wasn’t enough.
“The morning of my surgery, Dr. Aizenberg told me she didn’t have all the answers she needed. She said, ‘I’m going to have to wake you up during the surgery.’ That was quite a blow.”
Amy was reluctant, but she had come to know Dr. Aizenberg and appreciate her experience. “I trusted she could handle it, and that I could handle it, too.”
Dr. Aizenberg says that although any patient with a tumor in an area of eloquence or function is a candidate for an awake brain operation, “It’s not cookie-cutter surgery. Every patient is unique. Not all patients will be able to participate during the surgery, and you can’t always predict what you will find. I spend a lot of time thinking about my cases and going over everything.”
She says she decides what surgical technique would be best on a patient-by-patient basis. “I explain things explicitly. When they understand what’s going to happen, people are more comfortable. Some are nervous, but I’ve never had anyone refuse an awake surgery because they understand it will help me make things better for them.”
Amy says she found strength in Dr. Aizenberg’s confidence – and in her own faith.
“I have complete faith that God is doing what needs to happen in my life. God intervened and sent me to Dr. Aizenberg. God gave her those skills. I had complete faith it would be okay.”
Amy remembers being awakened during the lengthy operation. She had a washcloth in her right hand and was asked several times to squeeze it. Someone’s finger was moved across her right foot and then she was asked if she felt it. They would ask her to smile and she’d comply. When there was a twitching sensation, she would say where she felt it.
She heard Dr. Aizenberg’s voice and recalls how the surgeon commented that “such-and-such was being pesky. She likes to say ‘pesky.’”
She also heard something wonderful.
“I remember someone said, ‘Go tell her family she’s doing fantastic.’”
Immediately after the operation, Amy underwent another MRI to determine if any of the tumor had been left behind. Because the tumor was cancerous, she underwent a series of radiation treatments, five days a week for six weeks.
“When I found out about the radiation,” Amy recalls, “some people told me I didn’t need it. Some people told me I should get a second opinion. Some people told me they were sure it was the right thing to do.
“I would flip those thoughts around in my mind and think, ‘Dr. Aizenberg is doing this because she feels it is the best treatment for me.’ Her confidence gave me confidence.”
An MRI in April indicated no tumor growth. Amy will undergo an MRI this fall and every six months for at least five years.
Does the possibility of recurrence frighten her? “It would depend on which day you ask me,” she says. “Today, it’s kind of bothersome to think I may actually know what might kill me.”
Amy and her husband have been married 20 years, and she says she wants to spend another 20 or 30 years by his side. She wants to watch her kids – Micah, 14; Valerie, 12; Joya, 9; and Lukan, now 4 – grow up. She wants to be there when they get married and when her grandchildren are born.
Because of Dr. Aizenberg and the other specialists who cared for her, her strong Christian faith and the family she loves, she says she has hope.
“Really, I have the same thing everyone has. I have each day as God gives it to me.”