Walter Newman was feeling optimistic as he was wheeled into the operating room for deep brain stimulation (DBS) surgery to treat symptoms of Parkinson's disease in March 2014. "My surgeon had cautioned me that results were not guaranteed, but I'd watched some videos about people who had gotten wonderful results, and I assumed that mine would be just as good," says the 67-year-old lawyer from Sumter, SC.

At the time, Newman was experiencing worsening Parkinson's symptoms. "My hands and arms were getting stiffer and my tremor more bothersome," he says. "And the medications I was taking were [becoming] less effective, even though I was taking them more often and at a higher dose. The effect was unpredictable: I didn't know if the medications would last for four hours or wear off after two."

His steady decline made Newman feel gloomy about the future. Then his neurologist recommended DBS, a treatment approved by the US Food and Drug Administration for three movement disorders: Parkinson's disease, dystonia, and essential tremor.

"DBS is like a pacemaker for the brain," says Leonardo Almeida, MD, assistant professor at the University of Florida Health Center for Movement Disorders & Neurorestoration in Gainesville. Electrodes are implanted in one or both sides of the brain and connected to a pulse generator placed under the skin of the chest, he explains. "The electrodes send signals to brain cells that regulate motor function." The goal is to block the abnormal nerve signals that cause Parkinson's disease symptoms. DBS is performed while patients are awake (under local anesthesia) so they can provide feedback that helps the surgeon position the electrodes in the optimal location.

Another Treatment Option

"DBS is typically recommended for patients with movement disorders who are either resistant to medication or who no longer respond to the same dose as the disease progresses," says Dr. Almeida. "For Parkinson's disease in particular, patients can experience a rollercoaster of symptom escalation and reduction called motor fluctuations, which are a major source of disability and one of the main indications for DBS," he says. "DBS doesn't cure movement disorders or slow progression, but it has a high success rate for alleviating symptoms, with 70 to 80 percent reduction in tremor severity for essential tremor patients, and a remarkable reduction in motor fluctuations and Parkinson's symptoms such as tremor, slowness, and rigidity." Like all surgeries, DBS has potential complications, with a 3 to 5 percent risk of a post-surgical infection, a 1 percent risk of stroke, and a very minimal risk for seizures due to irritation of the brain while implanting the electrodes, he adds.

It's also important to note that DBS is effective only in Parkinson's patients who have had prior benefit with medications, says Gary Gronseth, MD, FAAN, vice chair of neurology at the University of Kansas Medical Center in Kansas City. "For people who have not responded to Parkinson's disease medications, DBS will not help," he says.

It's also possible that patients will need multiple surgeries, as was the case with Newman. "My surgeon said I needed electrodes in both sides of my brain, but my insurance plan required me to have one side treated and wait a few months to see if that helped," he says. "After the first surgery, I got very discouraged because it took weeks of adjusting my medications and the settings on the electrodes before I saw any improvement."

Manage Expectations

Procedures such as DBS and other surgical operations can treat a range of neurologic conditions, including Parkinson's disease, epilepsy, myasthenia gravis, acoustic neuroma, and meningioma. However, in most cases they are not cures or overnight miracles, as Newman can attest. "My body needed time to adjust to the treatment, and I had to work closely and persistently with my doctor to get results." With modest improvement in his symptoms six months after the first operation, Newman decided to go ahead with the second surgery, but he was careful not to set his hopes too high.

"My ultimate DBS experience was very positive," says Newman. "After my second surgery, my condition improved greatly within a matter of weeks. I've been very pleased with the final result and would recommend it to anyone in the situation I was in."

Determine Whether You Are a Candidate

Kim Eldridge, 44, an IT consultant from Louisville, KY, was diagnosed with myasthenia gravis, a chronic autoimmune neuromuscular disease that causes weakness in the arms, legs, and muscles involved with breathing, in 2011. By early 2015, her symptoms had worsened to the point where she was hospitalized three times with respiratory problems. After the third hospitalization, her doctor asked her why she hadn't considered a thymectomy, a surgical procedure to remove the thymus gland. The thymus is thought to play a central role in the autoimmune response and the origin of myasthenia gravis, says Gil Wolfe, MD, FAAN, chair of the department of neurology at University at Buffalo School of Medicine and Biomedical Sciences and lead author of a 2016 study on thymectomy published in the New England Journal of Medicine.

Dr. Wolfe and colleagues found that newly diagnosed patients who took the steroid prednisone and underwent thymectomy were more likely to be symptom free, had fewer hospitalizations, and needed less medication than patients who took prednisone only. "For many years, thymectomy was believed to be helpful, but our study was the first [randomized controlled trial] to prove that it's beneficial." Longer-term data, not yet published, show that more than 80 percent of the patients had minimal symptoms or disability after five years, says Dr. Wolfe. "Some patients may still be on medication, hopefully at a lower dose, and may still have some weakness on careful examination, but they can otherwise lead essentially normal lives."

Previously, Eldridge had been told that she wasn't a candidate for thymectomy because her severe shortness of breath might make anesthesia risky. To find out if this was still the case, she consulted a surgeon with expertise in performing thymectomy using a minimally invasive robotic technique. This method uses a tiny 3D camera and dime-sized surgical instruments that are inserted through small incisions on the right or left side of the chest as the surgeon uses hand and foot controls to move remotely operated robotic arms connected to the instruments.

Eldridge, a single mom with two school-aged children, asked the surgeon many questions before agreeing to the procedure. She also talked to the anesthesiologists about the safest methods of sedation and which drugs were least likely to cause breathing complications. She decided to have the thymectomy after discussing it with her doctors, reading studies in medical journals about outcomes, and talking online to other patients with her disease.

After undergoing the procedure in December 2015, Eldridge noticed an immediate difference. "I no longer felt like an elephant was sitting on my chest, squashing my lungs," she says. However, it wasn't until a year later that she saw further improvement. "That's when I started using less medication and had more energy. Over the next few months, I felt like I was coming out of a fog and could finally do the things I enjoyed again."

Seek a Second Opinion

Dawn Warner, 49, a travel agent from Stone Mountain, GA, wishes she'd asked more questions before her thymectomy. Her surgery required a 9-inch incision to crack open her ribs to reach the thymus. "Two months later, I learned that thymectomy can also be done through small incisions in the side, using a robot."

After the first surgery in 2004, Warner had chronic pain for several months and required two additional surgeries to treat a series of complications, including severe scarring and an infection. To make matters worse, she continued to struggle with the same symptoms: double vision, impaired speech, frequent falls, and difficulty holding objects and opening doors.

Despite her disappointment and continued symptoms, Warner says she doesn't regret the surgery. "My thymus had tumors and needed to come out. I just wish I'd gotten a second opinion about the best way to have this operation."

Both types of surgery may be equally effective, says Dr. Wolfe. "Many patients, however, prefer the minimally invasive approach because there is no midline scar over the chest and the recovery is faster. In an experienced surgeon's hands, both procedures are very safe, with a rate of major complications below 1 percent."

However, achieving complete remission and taking no medication after surgery is unusual, says Dr. Wolfe. "It happens, but not as often as we would like, and a minority of patients—maybe up to 15 or 20 percent—continue to struggle with symptoms of the disease."

Surgery for Seizures

Fay Bachman, 65, a registered nurse in Phoenix, spent 27 years fearing the next seizure. From age 20 to 47, she had four complex partial seizures (brief seizures that start in a single area of the brain) every 10 to 12 days, ultimately forcing her to give up driving and her career, and limiting what she could do with her children.

At 40, Bachman learned that surgery could possibly cure her temporal lobe epilepsy. Yet, despite having three risk factors that made her a candidate for surgery—increased chance for accidental injury, poorer quality of life, and worsening cognitive function—she decided against it. "I thought, 'With surgery I can get better, worse, or I can die. I've got kids, so I'm not going to do it,'" Bachman recalls.

The risks are worth taking, argues Joseph I. Sirven, MD, FAAN, professor of neurology at Mayo Clinic in Phoenix. "Anything that stops seizures, whether that's surgery or medication, reduces the risk of death," he says. "If you are a candidate for surgery, that's your best shot at it." People who are candidates for surgery generally experience seizures frequently enough to impact their quality of life, and their seizures originate in a single, identifiable area of the brain where it's safe enough to operate, says Dr. Sirven.

Medication-Resistant Seizures

For the next seven years, Bachman tried to control her seizures through a series of dietary changes and nine different medications. "By 1999, I'd had it," she says. "The seizures made me tired, and it was taking me longer to recover between them." In 2000, Bachman had an amygdalohippocampectomy, a surgery in which her left amygdala and hippocampus were removed. She later returned to nursing and has been seizure free for 18 years.

"It's been quite a blessing," she says. I often wish I hadn't waited those seven years, but I look back on the progress made in those seven years in terms of the surgery, and it was a good thing."

High Success Rate for Surgery

Advances in epilepsy treatment have continued apace in the two decades since Bachman's surgery. Seizure surgery usually involves removing the parts of the brain causing the seizures. The latest procedure is thermal ablation, also known as laser interstitial thermal therapy. This minimally invasive surgery uses an MRI to target the area of brain where seizures originate. Surgeons make a small incision in the scalp and a very small hole in the skull to remove the affected area of the brain. Earlier surgeries required removing part of the skull.

Following surgery, between 50 to 85 percent of patients are seizure free, says Jerome Engel, MD, PhD, FAAN, professor of neurology, neuroscience, psychiatry and biobehavioral sciences, and director of the Seizure Disorder Center at the David Geffen School of Medicine at UCLA.

"Despite its extremely high success rate and safety record, surgery is surprisingly underutilized as a treatment for drug-resistant epilepsy," says Dr. Engel. "Less than 1 percent of patients who might benefit from it are referred to epilepsy centers." That's partly because doctors who treat people with epilepsy often don't recognize which patients might be good candidates, so they don't send them for evaluation, he adds.

In a small randomized clinical trial conducted by Dr. Engel and published in the Journal of the American Medical Association in 2012 comparing temporal lobe surgery to medication in patients who still had seizures after trying two different medications within the last two years, 85 percent of surgical patients were still seizure free after two years.

Make Your Surgical Consultation Count

To decide whether surgery is the right treatment for you and to learn more about the operation and what to expect, schedule an appointment with the surgeon who will be performing the operation. Alyx Porter, MD, assistant professor of neurology at Mayo Clinic in Phoenix, offers these tips to help you prepare for your appointment.

Do your research. The surgeon will explain the details of the procedure you're considering, but you'll understand them better if you have a basic understanding of the surgery beforehand. Ask your neurologist for patient materials on the procedure or the best places to find information online. Trustworthy websites include Mayo Clinic, the National Institutes of Health, and nonprofit medical organizations for patients with your disorder.

Confirm insurance coverage. Before the appointment, make sure the surgeon accepts your health plan. Also, find out if the surgery is covered and what your copayments are. Bring your insurance card and photo ID to the appointment.

Gather your medical records. If you've had a previous surgery, a recent biopsy, or imaging studies, be sure to collect all of those reports. Ask that your images be placed on a CD-ROM or flash drive so the surgeon can review them. Since it may take several days to obtain these materials, ask for them well in advance of your consultation.

Document your symptoms. To help the surgeon understand how your disorder affects your life, make a list of your most bothersome symptoms and offer specific examples of how they interfere with your life. For example, instead of saying that you are short of breath and get tired easily, explain that you get winded climbing a flight of stairs or find it exhausting to walk more than a couple of blocks.

Prepare questions. Write down all your questions and concerns before the appointment and bring them with you.

Bring a friend or relative. Meeting with a surgeon to discuss procedures and your neurologic disorder can be stressful, making it difficult to absorb what the doctor tells you. Having a friend or family member at your side will provide much-needed support. Plus, your companion can take notes on the discussion and help you get all your questions answered. You may also find it helpful to record the discussion.

Arrive early. Typically there is a lot of paperwork to fill out before a surgical consultation, so give yourself a little extra time so you don't have to rush through the forms.

20 Questions to Ask Before Surgery

About 48 million Americans undergo surgery in a given year, according to the US Centers for Disease Control and Prevention—and well-informed patients tend to be the most satisfied with their results.

Educating yourself about the potential risks and benefits will help you decide whether surgery is right for you. Part of that education should involve talking to different specialists such as physical, occupational, speech, and swallow therapists; a psychiatrist; a neuropsychologist; and a social worker, in addition to the neurologist and neurosurgeon, says Leonardo Almeida, MD, assistant professor at the University of Florida Health Center for Movement Disorders & Neurorestoration. A team-based approach provides different perspectives on your specific condition and helps set your expectations for what surgery can improve and what it may potentially worsen, he says. "This way you and your family will feel more confident knowing what to expect and how to prepare."

Start with these questions, suggests Alyx Porter, MD, assistant professor of neurology at Mayo Clinic in Phoenix.

1. What is the name of this surgery, and what's involved?
2. Are there other ways to perform this procedure, and, if so, which one is best for me?
3. What are the alternatives to this surgery?
4. Are there any treatment options we haven't explored?
5. What are the potential benefits of this procedure, and how long will they last?
6. How likely is the surgery to improve my symptoms and quality of life?
7. What are the risks and possible complications of this operation?
8. What will happen if I don't have this surgery?
9. How often have you performed this procedure?
10. What is your success rate?
11. What are my anesthesia options?
12. Will I get to talk to the anesthesiologists beforehand, and will they be aware of my neurologic disorder, allergies, and any medications to avoid?
13. Will all my bills—hospital, surgery, radiology, lab, and anesthesiology—be covered by my health plan? Are any of these services out of network?
14. What can I do before the surgery to help ensure the best result?
15. What tests will be done before the surgery?
16. What will my recovery be like, and when can I expect to resume my usual activities?
17. How much pain will I have post-surgery, and what are my pain management options?
18. Will I need any additional treatments after the surgery?
19. What kind of follow-up care will I need/receive?
20. Where can I get a second opinion? Who do you recommend?