Beka S.

Age: 44, Dystonia

What helped you decide to pursue Medtronic DBS Therapy?*

Nursing is my livelihood and I love it. But my dystonia made me feel that I was facing an early retirement.

I hated looking in a mirror or a photograph, as I was distressed and upset at the person looking back at me. There were moments when I felt caged in by the disease; it caused me to live a life that was lonely, isolated, and full of social embarrassment. In public I began wearing a variety of scarves and sweaters that had collars to hide the physical distortion I saw in the morning each day. I stopped wearing dresses. The mental anguish persisted, often in silence unbeknownst to family, friends, and colleagues.

For 17 years I took oral medications and Botox** injections to manage my dystonia. But none worked effectively long term.

I wanted a treatment that was more permanent. I investigated DBS Therapy online, and scheduled several consultations with neurologists.

What Daily Victories have you achieved since receiving Medtronic DBS Therapy? What is life like with DBS Therapy? How has your therapy impacted those around you?

Shortly after my operation, I was walking back to my apartment from the hospital, eating, and laughing. I was out on Fifth Avenue buying a new wardrobe and attending Mass at St. Patrick's Cathedral. I looked normal, typical, natural, and ordinary, just like every other person on New York City streets.

I don't have to plan every aspect of my life – with one exception. Being a nurse practitioner, I have learned to avoid certain environments, knowing the strength and impact of electromagnetic fields on my individual settings.

I'm re-learning life now. Recently I began riding horses again. A close friend has taught me so-called "centered riding" to aid my balance. I rode a bicycle twice while traveling in Aruba. I practice watercolor painting, read plenty of books, and maintain a blog. I can even wear high heels!

My colleagues regard me as "famous" for receiving DBS Therapy, and I receive accolades of "Bek, you look great!" But sometimes these well-meaning sentiments have the unintended effect of making me feel different from everyone else.

What has been most challenging in receiving Medtronic DBS Therapy?

The results of DBS Therapy can be inconsistent, and I've had my programming settings adjusted several times.

I have noticed a pattern. My settings only last for 6 to 7 weeks at a time before my dystonia symptoms return and I need reprogramming. When I reach the end of this period, I feel like punching a wall.

Finding the optimal settings can be tricky, and caused many temporary side effects for me, including: leg dragging, loss of speech, hoarseness, loss of verbal understanding (expressive aphasia), gait difficulties, and tingling of the limbs (paresthesia). I would also experience fatigue, headaches – sometimes the worst of my life – and nausea.  

I've also had to have my electrode contacts changed. "Voltages," "amplitudes," "pulse rates," "widths" – these terms all seemed like a foreign language to me, which led to frustration and confusion.

When the system performs at optimal settings, I feel well and experience no dystonia symptoms.

How has your neurologist (or other physician) helped with DBS Therapy?

My neurosurgeon has been compassionate and reassuring. He's helped me with decision making, and obtaining a new battery. But he's also shown interest in my life outside of the clinic. He celebrated my nurse-practitioner graduation with me, and applauded me when he saw me ride a horse for the first time after receiving therapy. I've emailed dozens of questions to him about DBS, all of which he answered personally.

What advice do you have for others who are considering Medtronic DBS Therapy?

Do your homework first. I'm not sure I was as well prepared as I should have been at the start of DBS Therapy. There is so much to learn.

You must realize that DBS Therapy begins with an implant, but it doesn't end there. Don't go into surgery expecting a cure, but a form of symptom management. Therapy is ongoing. There will be highs and lows.

Use the Medtronic website to locate qualified neurosurgeons. Don't expect the same results as others receiving DBS Therapy. And don't regard going back on meds as a setback.

Never give up! The journey can be long, and it helps to have a great support system like I do.

*Humanitarian Device: The effectiveness of this device for the treatment of dystonia has not been demonstrated.

**Botox is a registered trademark of Allergan, Inc.

Medtronic invited this patient to share her story candidly. Not everyone who receives Medtronic DBS Therapy will receive the same results as the individual in this story; some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. Talk to your doctor to determine if Medtronic DBS Therapy is right for you.

DBS Therapy requires brain surgery. Risks of brain surgery may include serious complications such as coma, bleeding inside the brain, seizures and infection. Some of these may be fatal. Once implanted, the system may become infected, parts may wear through your skin, and the lead or lead/extension connector may move. Medtronic DBS Therapy could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return.

Medtronic DBS Therapy may cause worsening of some motor symptoms associated with your movement disorder, and may cause speech and language impairments. Stimulation parameters may be adjusted to minimize side effects and attain maximum symptom control. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts and suicide have been reported.

This therapy is not for everyone. Please consult your physician. A prescription is required. For a complete list of adverse events that have been associated with the therapy, please refer to Important Safety Information.