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DBS_0824Deep Brain Stimulation is like a miracle from heaven. It’s a wonderful gift to regain a fluid range of movement when you have Parkinson’s disease.

If you’re like me, you’ve got a Medtronic Activa SC, a nonrechargeable handheld patient battery that communicates with the DBS neurostimulator in your chest. Depending on how much stimulation you’re programmed to receive each day, Medtronic states that on average, this model lasts from 3 to 5 years before you have get the neurostimulator replaced in a surgical procedure. Although this is not a model you have to charge, the one thing you should do is check it.

When you leave the operating room, you’re usually given a wire-bound Medtronic DBS Therapy user manual, a DVD, and lots of advice on how to check it.

Monitoring instructions straight from the neurosurgeon

Mark Sedrak, neurosurgeon at Kaiser Permanente Redwood City says, “For your own well-being, please be advised that monitoring your deep brain stimulator battery is vital in ensuring appropriate timing of your battery replacement. Check your battery every 3 months initially after implantation. The battery level will start off above the 3.0 and fairly quickly plateau around 2.9, which is normal. Please contact your healthcare provider by calling or sending secure messages when battery reading is at 2.69 or lower and check the battery status every month thereafter. Please refer to page 47 of the DBS Manual on Instructions Evaluating Battery Level

 How to Check Your DBS Non-rechargeable Battery level.”

A scare not to experience

If you don’t check it regularly, you may get the same scare I experienced. I confess, I didn’t know my DBS battery well. Although it was carefully explained to me in the doctor’s office, as time flew by, I forgot the key functions, especially since I didn’t look at it regularly. I’d try to reread the instructions maybe the night before I was traveling to Europe, or just before my annual checkup with the movement disorder specialist.

Honestly, I could never figure out how to turn it on and off. Every time I used it, I’d have to look up how to do it in my manual to decipher what the therapy screen was saying.

Time Flies

So the first year went by, and then the second. Two years and nine months later, the numbers had slowly declined, but since I hadn’t hit three years, I thought I was still in great shape. Then, one day after not checking it for 6 weeks, I reminded myself to check it. When I did, I got the shock of my life.

What is the therapy screen telling me?

There on the therapy screen—as though the graphics had come to life and were about to strangle me—was a drawing of a doctor with a stethoscope, and an old-fashioned land phone illustration with a squiggly cord. I scrambled for my user manual. One-hundred-five pages into it, I found the cause and action for the warning screen leering at me. If I hadn’t been so panicked, I’d also have found an answer on page 47. “Call your doctor,” [it said in bold.] “Your nonrechargeable neurostimulator battery service is low. This means that your therapy will not be available soon.”

It was a sleepless Sunday night and I was on my own until I could call my doctor the next morning. I was fortunate because Kaiser Permanente Redwood City is the best ever and squeezed me in for surgery to replace the battery very quickly. Because of the high setting in my neurostimulator, it turns out that my battery needs to be replaced at 2.9 years instead of 3 to 5 years.

When I confessed my poor track record of checking to physician assistants Ivan Bernstein and Diana Bruce, they implored me to put out the word to the DBS community, “don’t forget to check your neurostimulator.” They told me that sometimes people wait until their neurostimulators stop working altogether and their tremor returns. It is really hard for the hospital to schedule emergency surgeries that could have been planned with advance warning. Sometimes, those people have to wait and shake a while.

A special request from the physician assistants

Ideally, Bernstein and Bruce request that you check weekly starting in year 2. At that stage, you need to get into a habit of checking and knowing how to use the patient programmer. “We have had 6 patients come in this year with dead batteries,” revealed Bernstein.

If you have questions about your deep brain stimulation battery, chat with your local Metronic representative who can answer questions and explain the things you’ve forgotten. If you don’t have the name of a representative in your area, call Medtronic Patient Services, 800-510-6735.

Medtronic representatives in the Bay Area

In the Bay Area, we have several Medtronic representatives who are happy to assist you. Here are three of them:
• Donna Gow, DBS Therapy Sales Specialist, Medtronic Neuromodulation, Northern California, cell #: 415.370.3555, Email:  Donna.gow@medtronic.com
• Todd Harris, DBS Therapy Sales Specialist, Medtronic Neuromodulation, Northern California, cell #: 408.656.3479, todd.harris@medtronic.com
• Tim McMorrow, Senior Therapy Representative, Medtronic Neuromodulation, cell #: 650.504.2514, tim.mcmorrow@medtronic.com

Tips:

  • When you check your battery, take a photo of it. That way, if you can’t remember how long it has been since you checked, you can look up your last photo to see when you took it.
  • You might want to tag the emergency screen pages in your manual so that when a problem sign comes up, you won’t have to madly tear through the pages to decipher the problem.
  • You might even want to make an emergency checklist of actions to take when it is time to plan for replacing your battery.

About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen

 

 

4 thoughts on “Regularly Checking Your Brain Stimulator Battery?

  1. Hi Darcy, Thanks so much for this post. It’s most helpful. I recently had a hip replacement, and had to turn the system off/on for the surgery. It’s good to practice that as well. Cheers, Kate

    Sent from my iPad

    >

  2. I had to replace my battery after only 2 years and decided rather than go through surgery every 2 years I would try a rechargeable one. i do have to recharge once a week for about 2-3 hours but so far so good.

    Rick H.

    • Rick, Thanks so much for your note. I think I will go RC next time. Just had my surgery yesterday, and the thought of doing this again so soon isn’t something I look forward to! I’ll be writing about choosing between RC and SC next!

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