Frequently Asked Questions about Deep Brain Stimulation

Is there an optimal point in the course of the disease at which to consider DBS?
This is based on each individual however, in general terms expert DBS centres agree that when medication intervals become very close in time (within 2–3 h), and on–off fluctuations, dyskinesia or tremor emerge and are difficult to control, then it is time to consider DBS therapy. Many experts would delay invasive surgical therapy for as long as possible, however DBS has the potential to dramatically improve quality of life, and therefore when medications are not effective anymore, DBS surgery will become an option for patients.

For how long do the results of the neuropsychiatric evaluation remain valid in the decision-making process to proceed with DBS?
Generally speaking, between 6 months to 1 year, unless a dramatic change in the condition has occurred. You should inform the team looking after you.

What does it feel like when your device is being programmed?
While majority of people would not be able to describe a feeling as such, some would describe unusual sensation such as tingling, pins and needles in the first few seconds but then disappears. This is very unique to every person, but those feelings would settle down within few second to minutes and your DBS team would always check with you that any sensation you are experiencing is not uncomfortable.

How often should I attend for programming?
This will depend on your indication (Parkinson’s, Essential Tremor or Dystonia). In general, you would have 2 to 5 appointments for programming in the year following your DBS surgery. Everyone has a different requirement and your clinician will be able to advise how often adjustments will have to be made.

Typically, how long does a programming session last?
Your initial programming would take longer than the other programming sessions, it could be between 1h30 to 3hr. From there, visits are generally shorter, depending on your feedback and your symptoms (around 1h-1h30).

Do I need to be accompanied for programming?
For Parkinson patients on their first appointment, they will usually be asked to come off- medication for your first programming session. We recommend that you come accompanied for this first appointment. For other conditions such as Dystonia or Essential tremor, you usually do not require to be accompanied, however everybody is different and if you would prefer to have someone with you during those appointments, please let your DBS team aware of it prior to attending the clinic.

Will I be able to reduce my medication as I achieve optimal programming?
Medication reduction will be advised by the team looking after you. The majority of patients could see a reduction in medication, however, it will depend on your indication and symptoms . Unfortunately for Parkinson’s, some people may have to take medication a few years later as the condition progresses.

Will I experience headache after implantation of a full system (electrodes, extensions and battery)?
Headaches are possible, they usually last for 48h after surgery. During this period, you will still be in hospital, please do not hesitate to speak with your DBS team if your headache does not go away.

How long will I be in hospital?
Depends on the centre and their local practice. Usually the stay in hospital can vary between 2-3 days to a week, considering that you do not have any complications following the surgery.

Will my head be shaved in hospital prior to surgery? Should I shave it myself?
Depends on the centre and their local practice. Hair shaving is part of the surgical procedure and the surgeons will do so as per their practice. If your centre wants to shave your hair for the DBS surgery, please do not do it yourself prior the surgery, as you may increase your risk of developing an infection.

How long will the recovery period be, post hospital discharge?
The recovery period post hospital discharge should be relatively short, if you do not have any complications following your surgery at the hospital. You should make sure your wounds are always clean and dry, you need to keep in mind that your head, behind your ear, along your neck and in your chest will be sore and might be painful for a couple of days, or weeks. Post-surgical pain could be treated with a mild analgesic, therefore speak with your DBS team about it, if you feel you are experiencing any discomfort.

How much support will I need at home after I’m discharged from hospital?
Usually people who had a DBS surgery do not need extra support due to the surgery when back at home.

How soon after surgery can I return to work?
It depends on the type of occupation you have, as physical activities vary role to role. You will need to speak with your DBS team to ensure that you are physically fit to return to work.

Can I have MRIs, CT scans, DEXA bone density scans either in emergencies or for routine MRI: health diagnostics after DBS?

MRI:

Yes, you can potentially have an MRI if your DBS devices is called Vercise Gevia, Vercise Genus P16 and Vercise Genus R16 are MRI compatible. However, it is important that you inform your DBS team of any medical exam, such as MRI, as they need to check that you are eligible for an MRI (such as electrodes and extensions implanted, position of the battery). Your battery will need to be placed in MRI mode for the full time of the exam, which will be achieved by the medical team using your remote control.

X-ray and CT scans:

X-rays and CT scans can potentially damage your battery if the stimulation is ON during medical exam, but if the stimulation is off, X-ray and CT scans are unlikely to damage the stimulator.

DEXA scan:

Similar precaution needs to be taken as CT scan for this medical exam. If the stimulation is off the DEXA scan is unlikely to cause any damage the stimulator.

What does it feel like to live with an implanted DBS system?
Some people will feel the battery in their chest and sometimes the cables in their neck, however for most patients they get used to this sensation, and because of the improvement of their quality of life, the benefit of the system outweighs the sensation.

Are there any activities/practices/sports I must avoid, to live well with a DBS system?
All extreme exercises (body jumping, skydiving ,…) where the risk of being injured is high, should be avoided as an open wound will increase your risk of infections.Deep diving could also be dangerous due to the pressure as you go into deep water and therefore should be avoided. Please check your specific recommendations with your DBS centre.

Can I have a mammogram after DBS?
Yes, you can. Your DBS system will be turned off for the time of the mammogram exam. You will need to inform the medical team performing the exam prior to your appointment know that you have a DBS system.

How soon can I travel by air, post-surgery?
Patients could potentially travel by air two weeks after their DBS surgery if necessary (for example patients having a DBS in UK< while living in Ireland). However when possible, DBS team will recommend not to travel until their medication and settings are all stable.

Are there any special instructions/cautions regarding passing through airport security?
Strong electromagnetic fields can potentially turn your battery off, cause temporary unpredictable changes in stimulation, or interfere with the remote-control communication with the patient’s battery. Therefore, patients should avoid going through airport security. The patient should request assistance to bypass the security gate and request a hand search. If the patient must pass through the security screener, they should move quickly through the device staying as far from the physical device as allowable.

Is it advisable to carry my remote control with me at all times when I leave home or just under particular circumstances?
We will recommend that you always carry with you your remote control, rather than leaving it at home. It is unlikely that you need it, however as mentioned previously strong electromagnetic fields can potentially turn your stimulation off and therefore you would like to ensure you have your remote control with you to turn back on the stimulation.

If the remote control or battery charger malfunction, who should I contact, either when I am at home or abroad?
Your Neurologist team/hospital where you received the implant should always be your first point of contact.