Ask Grace

These statements reflect the experience of one individual who is receiving a Medtronic Pain Therapy for the treatment of chronic pain. Medtronic invited this person to share her story candidly. As you read it, please bear in mind that the experiences are specific to this particular individual. Not everyone who receives neurostimulation therapy will receive the same results as this individual. Talk with your doctor to determine if neurostimulation therapy is right for you.

Ask Grace

Grace has been receiving neurostimulation therapy since 2002. Below are some of the common questions she hears from others who are receiving neurostimulation therapy, and her answers.

What have you learned about neurostimulation therapy that you weren't aware of before your implant?

Grace says: Some things I learned soon after I started neurostimulation therapy, and others took me longer to discover:

Postural surge can occur when changing body positions – Postural surge is that immediate increase in stimulation you may experience when you change to certain body positions. Early on, when I would lay down without first lowering my level of stimulation, the postural surge came as quite a surprise. But after a while, I learned when to expect it, and now I use postural surge to my benefit. When I find my level of pain beginning to increase and I don't have immediate access to the MyStim^® patient programmer, I will intentionally create a postural surge. It gives me immediate relief.

When it's time for my device to be replaced, I'm looking forward to AdaptiveStim^®, available with the RestoreSensor^® neurostimulator. AdaptiveStim is a new technology that automatically adjusts the stimulation setting for you as you change body positions.

Location and type of pain can change – After receiving neurostimulation therapy, my activity and range of motion changed, creating new pain that I didn't experience when I was sedentary. My programs had to be adjusted to account for my more active lifestyle. It was an easy fix and well worth it.

Stimulation needs can change – Sometimes a level of stimulation that has given me relief will inexplicably become too much or too little. This can easily be fixed by adjusting the strength or rate (pulse speed) of stimulation.

Some levels of stimulation can be fatiguing – I have learned that the stimulation doesn't have to be strong for it to work. If I keep my stimulation at a very low level when I'm not experiencing strong pain, it still gives me relief and often keeps my pain from increasing. If given the choice between pain and fatigue, I will choose fatigue every time!

Don't be afraid to experiment with your MyStim programmer. Sometimes the smallest change can make a huge difference. When in doubt, ask your doctor or Medtronic Patient Services, (800) 510-6735. Had I not asked if it were possible to create a program that would give me pain relief while cycling, I would have missed out on the pleasures and adventures I've had biking with my husband!

Before traveling, do you take any special precautions with your neurostimulator?

Grace says: My neurostimulator doesn't interfere with my traveling. I follow this checklist before I leave:

Recharge my neurostimulator. I have a rechargeable neurostimulator so I make sure the battery is fully charged.
Place my recharger in my handbag or carry-on luggage. (I never place this in my checked luggage in case the luggage gets lost!)
Pack fresh batteries for my programmer. I make sure my patient programmer has fresh batteries and that I have a set of backup batteries with me.
Place my patient programmer in my handbag or carry-on luggage. (Again, I keep this with me instead of in my checked luggage.)
Find a doctor in the area I'm visiting. I use the Medtronic Physician Finder to find the name and location of a doctor who is familiar with neurostimulation therapy.
Confirm that my Medtronic ID card is in my wallet. I show this to the attendants when I approach the medical detector so they aren't concerned when I set off an alarm.

With a little planning, my travels have been very smooth. Enjoy!

How long did it take until you reached your optimal stimulation setting where you felt the neurostimulator controlled your pain? How do you handle breakthrough pain?

Grace says: Even though I had immediate relief after having my neurostimulation system implanted, it took a couple of months to find my optimal settings. There were a couple of reasons for this. The first being the recovery period and having to take it easy during that time to allow scar tissue to form around the electrodes to ensure their permanent placement. The second reason was taking time to understand the myStim patient programmer and to work with my doctor to find the optimum settings that would give me the most relief.

Handling breakthrough pain isn't too difficult for me. If adjusting my stimulation level isn't enough, I usually have to back off on whatever it is I'm doing physically and change positions. If that isn't enough, I'll lie down until it passes. There are times when I have what I refer to as "bad back days." Those are the days when none of the above will give me relief. Because of my "bad back days," I maintain a low dose pain reliever. It is a fraction of what I took prior to getting my neurostimulation system, and is not something I use on a regular basis. But it is good to have for really bad days. Fortunately, the bad days are few and far between!

Now that you have a neurostimulator, what exercise activities keep you healthy?

Grace says: I understand the importance of staying fit to maintain my health. Keeping my weight down and my body strong, especially my core, has really helped me manage my pain. I enjoy group exercise and am motivated by the environment of "positive" peer pressure that it creates. I have also come to appreciate the importance of cross training.

The classes that I participate in are zumba, indoor group cycling, dance cardio, Pilates, yoga, HIITFIT (a high intensity interval training class), and TRX (a class that uses suspension cables for various exercises). I also cycle outdoors (road ride) with a group of cyclists.

If it weren't for my neurostimulator, I wouldn't be able to participate in these activities. There was a learning curve in finding out what activities required the use of the stimulator and at what level. I still make adjustments to my level of stimulation based on how I'm feeling on any particular day and the type and intensity of my workout.

I would like to note that I was not into physical fitness prior to my injury. It's also important to know that I didn't just jump into doing all of these activities at once. I slowly built up to them. When I started exercising, after recovering from my stimulator implant, I began by just walking around the block in my neighborhood or walking forward and backward in a swimming pool. When I started cycling, I would go around my neighborhood. Once an exercise became easy for me, I would make it more challenging by increasing the duration or the pace. When I started participating in classes, I would first observe the class and then discuss my limitations with the instructor. If I couldn't do a particular exercise in class, I would ask for a modification for that exercise. I found that other participants welcomed the opportunity of having a modification made available.

I still have limitations as a result of my initial injury, but I have learned to work around them by seeking out alternative activities. Prior to having the neurostimulator, I simply existed and that existence was a painful one. I couldn't even sit passively through a dinner much less actively participate in an exercise class. Now, I can sit through a dinner and a movie. I can work out and ride my bike for hours. I'm no longer just "existing," I'm living!

I am planning a trip to a resort. Are there any activities I should avoid or pay special attention to now that I have a neurostimulator?

Grace says: I have found that prior to trying out any new physical activity, it's helpful to do a little research first. With all the information available on the internet, it's easy to see what kinds of activities are offered at or near your vacation destination. If you're not familiar with a particular activity, call the resort and ask for more information prior to your arrival. This way you can make an informed decision whether or not you can participate in the activity.

Because you're feeling better due to the pain relief provided by your neurostimulator, it can be easy to forget that you still have limitations. Try to temper your enthusiasm with common sense. Avoid extreme activities such as skydiving, bungee jumping, or cliff diving. The excessive impact or torque generated by these types of activities can damage the leads or cause a loss of therapy. If you plan to scuba dive, take care to not go beyond a depth of 10 meters (33 feet). The pressure can cause your system to work improperly or fail altogether.

Prior to your departure, make sure you have fresh batteries and a waterproof case for your patient programmer. If you have a rechargeable neurostimulator, fully charge it before you leave. And don't forget to take your recharger and Medtronic ID card with you. If you have any concerns, make sure to address them with your doctor or Medtronic representative before you go.

Trust me, with a little forethought and caution, there is still much fun to be had!

I'd like to try yoga. How should I approach it if I have a neurostimulator?

Grace says: I suggest working with an instructor and starting with easy poses. Before signing up for a class, observe it and talk to the instructor, explaining that you have a neurostimulation system. Is the class for beginners or advanced? Is the instructor willing to suggest modifications when you can't perform a certain pose? Know your limitations. When I first started, I was doing stretches, strengthening muscles, and holding poses I had never done before. Take your time and build slowly so you don't overdo it. A lot of this applies to Pilates exercise as well.

I turn off my stimulation with the myStim programmer before I start yoga. If I don't, I get uncomfortable stimulation when I change positions and try to hold a pose – like going from standing to lying down to standing again. It's not practical to be manually adjusting stimulation with every move. When it's time for my device to be replaced, I'm looking forward to AdaptiveStim, available with the RestoreSensor neurostimulator. AdaptiveStim is a new technology that automatically adjusts the stimulation setting for you, as you change body positions.

Besides the physical benefits of yoga like improved flexibility, strength, and balance, I find yoga has a calming effect on me. It forces me to slow down when I'm in pain and relax mentally. Yoga is good for the body and mind!

What was your neurostimulator or lead replacement experience like?

Grace says: Early in my neurostimulation therapy, I had to have a lead revision due to a lead fracture. I was having a massage and even though I specifically told the masseuse to avoid the area, he "karate chopped" it. Within a day, I was no longer feeling stimulation on one side of my body. An x-ray confirmed that one of my leads had fractured. I was immediately scheduled for a revision. Because the doctor knew exactly where the new lead was to be placed, it wasn't necessary for me to be awake and tested during the procedure.

Years later, my therapy needs changed and I increased my activity level. My leads were replaced with a different kind of lead and I received a new generator. The procedure went smoothly.

Neurostimulator technology is always improving. Since my first system, the leads have become more flexible and more durable. The batteries have become smaller and more sophisticated. Although I have fallen a few times – off my bike or down my stairs – I've had no problems with my new system. I'm actually looking forward to my next elective battery replacement so I can get AdaptiveStim, available only with the RestoreSensor neurostimulator. AdaptiveStim automatically adjusts stimulation when you change body positions, like standing to lying down.

Grace did not experience any complications with her surgery. However, some people do experience surgical complications such as infection, pain at the site of surgery, or bleeding into the epidural space. Once the neurostimulation system is implanted, device complications may occur and include jolting, leads breaking, or movement of the leads within the epidural space, which may require reprogramming or surgical replacement of the leads. These events may result in uncomfortable stimulation or loss of therapy. For a complete list of adverse events that have been associated with the therapy, please refer to the Important Safety Information.

Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.

Last updated: 23 Apr 2013