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Frequently Asked Questions

DOES INSURANCE COVER THE COST OF THE PROCEDURE?

DBS is FDA-approved and covered by most health insurance companies. Some insurance companies require prior authorization before having surgery, and some do not fully understand DBS and may initially deny coverage. However, usually with some detailed explanation, the decision is reversed. Sometimes insurance denial is based on the false assumption that DBS is experimental. If your diagnosis is Parkinson’s disease, tremor, or dystonia, the proposed DBS surgery is approved by the FDA and is not experimental. If the DBS surgery is recommended for a different diagnosis, it may indeed be considered experimental and is at risk for denial of coverage. Experimental DBS surgery will require authorization/approval from your insurance company.

DOES THE DBS PROCEDURE NEED TO BE DONE WITH MRI? I HAVE A PACEMAKER AND CANNOT GET AN MRI

The MRI provides the clearest and most detailed pictures of the brain. This is the preferred method to make sure the best outcomes are achieved from surgery. However, DBS surgery can be performed using CT guidance. CT, or computed tomography, is a way of imaging the brain, but the detail in the pictures is not as good as with MRI. This may lead to suboptimal outcomes. CT-guided DBS is easier with VIM nucleus placement (done for essential tremor), as the VIM nucleus is a bigger structure and not as deep. CT-guided DBS is much more technically difficult if the neurosurgeon is trying to place a lead in the STN. Not every neurosurgeon is willing to do DBS surgery with CT guidance, so you should check with the DBS center to make sure they will do CT-guided DBS before making an appointment.

WHERE WOULD YOU PUT THE DBS STIMULATOR IF I ALREADY HAVE A PACEMAKER?

Pacemakers are typically placed in the same pocket in the chest where DBS stimulators are placed. Because pacemakers are placed on the left side of the chest, the DBS stimulator could be placed on the right side of the chest. Another alternative would be to place the DBS stimulator just under the skin in the abdomen. The extension wires from the leads to the stimulator would be longer, which would put it at higher risk for lead fracture, but there is generally more “padding” in the abdomen, so the stimulator does not stick out as much.

WHAT IF THE STIMULATOR BATTERY RUNS OUT? WHAT WILL HAPPEN?

It depends on what your symptoms are. If you have essential tremor, your tremors will not be controlled. While this is an annoyance, it is generally not considered an emergency, but you should contact the DBS team to have the stimulator replaced as soon as possible. If you have Parkinson’s disease, the symptoms of tremor, slowness, and stiffness may come back in full force over a couple of days. In some cases, this can be an emergency because you may be unable to move. Remember that you are on less Parkinson’s medications now, so the amount you are taking is unlikely to help as much as prior to surgery. If the stimulator battery runs out if you have Parkinson’s, you should contact your neurosurgeon or the DBS team as soon as possible. They may tell you to go into the emergency room, and an urgent battery replacement will be scheduled. If you have dystonia, the symptoms of your dystonia may come back over days to weeks. Again, this will be more of an urgent issue, and you should contact the DBS neurosurgeon or DBS team as soon as possible.

WILL OTHERS BE ABLE TO SEE MY DBS STIMULATOR?

Once you are healed, there is very little evidence that can be seen. At some centers, a small amount of hair is shaved above your forehead on the top of your head at the time of Stage I. Most women and some men are able to style their hair in such a way that this is not very noticeable. However, if you have short hair, or no hair, the incisions are likely to be visible to others until you are healed. If your DBS center shaves the entire head, then the incisions will certainly be visible until they heal and your hair grows back. There will be a 2- to 4-inch. incision in the scalp on the top of the head and a smaller incision behind the ear. Once healed, the incisions will leave scars that will be visible on balding heads but are well-covered when hair grows back.

The scalp will have bumps where the holes were drilled. The holes are filled with plastic caps that sit just under the scalp, leaving a small raised area. Again, in those with hair, this is not visible. In balding men, the raised areas on the scalp are more visible.

The extension wire that runs from the lead(s) in the brain to the stimulator is tunneled in the fatty tissue just under the skin. For most, the track of the extension wire is not visible. However, for those that are thin, it may appear as a large vein would, just under the skin.

The stimulator lies under the skin, just below the collar bone. Once healed, there will be a 3- to 5-inch. scar from the incision. The stimulator site will be slightly raised. This is more noticeable in those that are thin. It may be noticeable if one is wearing a bathing suit or low cut blouse. However, this generally is not seen through clothing.

WHY WOULD YOU CHOOSE THE STN AS A SITE FOR PARKINSON’S DISEASE? IT SEEMS THAT IT IS ASSOCIATED WITH MORE PROBLEMS THAN GPI

Most centers implant leads in the STN for Parkinson’s disease. This is mostly due to training and comfort with the procedure. In a recent large DBS trial comparing STN to GPi DBS for Parkinson’s disease, there was not much difference in the effect on motor symptoms. STN had a slight advantage in that people were able to reduce their medications more. In other studies, GPi is reported to have less depression and fewer problems with cognition after surgery, but in this large DBS trial, there really were not any clinically significant differences in outcome with respect to depression or cognition.

I LIVE ALONE. CAN I HAVE DBS?

It depends on whether you have family or friends that are available to stay with you for a few days after surgery and help you with transportation back and forth for your appointments as well as to and from the hospital. We have found that unless you have someone helping you, the outcome from your DBS will be disappointing. However, if you have willing family and friends who are interested in helping you, as long as you have not suffered any adverse events from surgery, once you have recovered from your DBS, you should be able to return to living alone.

I NEED TREMOR CONTROL IN BOTH OF MY HANDS TO PERFORM MY JOB. CAN I HAVE DBS FOR BOTH HANDS?

If you have Parkinson’s disease, you are likely to have bilateral surgery with placement of leads in the STN or GPi and experience tremor control in both hands. If you have essential tremor, lead placement occurs in the VIM nucleus of the thalamus, but often only on one side. This is done to see if there is enough benefit with tremor control in one hand. By doing so, the risk is cut in half. It has been our experience that most people can perform most of their activities with tremor control in one hand. However, if you find that you need both hands to be controlled, it is possible to place a DBS system for the other hand. However, keep in mind that those with bilateral VIM leads for essential tremor often describe problems with speech and balance.

HOW DO I KNOW WHEN TO USE MY DBS?

Individuals with Parkinson’s disease or dystonia will be instructed to leave the stimulator on continuously. There is no need to turn off the stimulators, unless undergoing a medical procedure. Those with essential tremor who have leads placed in the VIM can turn the stimulator on or off as needed, depending on when tremor control is needed. Many people turn the stimulator on in the morning upon waking and off at bedtime.

CAN I DO MY OWN PROGRAMMING?

Finding the correct contact on your DBS lead can only be done by the DBS neurologist or nurse who does the initial programming. However, with some of the newer stimulators on the market, they could set it so that you could turn your stimulator voltage up or down within certain limits. The Activa PC made by Medtronic, Inc., also allows the DBS neurologist to set different programs, which would allow you to switch your settings to the exact same settings it was on at the previous visit.

I HAVE ESSENTIAL TREMOR THAT AFFECTS MY VOICE. WILL DBS HELP THE TREMOR IN MY VOICE?

Although DBS is excellent for helping the tremor that is experienced in the hands and arms due to essential tremor, it is unlikely that DBS will help your voice with just a unilateral lead. Although there may be patients who notice a slight improvement in voice with unilateral stimulation, most notice no improvement. With bilateral stimulation, the voice tremor may improve, but bilateral stimulation will often cause slurred speech as well. Botulinum toxin injections are generally more effective for voice tremor than DBS.

WHAT IF SOMETHING LIKE STEM CELLS IS FOUND TO CURE PARKINSON’S DISEASE IN THE NEXT FEW YEARS? DOES UNDERGOING DBS NOW PREVENT ME FROM GETTING THAT TREATMENT?

One of the advantages of DBS is that it is reversible. The stimulation can be turned off, and the hardware can even be taken out. Having DBS now should not prevent you from getting another treatment in the future if it turns out to be better. However, new treatments such as stem cell therapy will need to be tested in clinical trials before they are approved for use in humans. During the clinical testing phase, you may not be able to participate because clinical trials are often restrictive in their inclusion criteria and will not include people who have had DBS.