Information for deep brain stimulation (DBS) patients leaving hospital

Contents

• Aim
• After your operation
• Post-operative complications
• Follow-up plan of care
• What will happen at my follow-up appointment?
• Returning to normal
• Short-term adverse effects of stimulation
• Long-term adverse effects of stimulation
• Specific warnings
• Contacts / Further information
• Complaints / Compliments
• Your Information

Aim

This information is to help answer any questions you might have now, and help you know what to expect after your operation and in the first few weeks after you return home.

Please feel free to ask any of your nurses or doctors if you have questions whilst in hospital.

Should you have any concerns after your discharge please contact our DBS nurse specialist on Direct Line 01223 217471.

After your operation

How long will I be in hospital following the operation?

You will normally come in on the morning of your operation and go home the next day. However, the actual time that you stay in hospital will depend on your general health and how quickly you recover from the procedure. When you leave hospital, you will be given contact details for the DBS team.

Is my stimulator device switched on before I leave hospital?

The stimulator remains switched off following your operation. It will not be switched on until your clinic appointment in six to eight weeks’ time, to give the brain time to settle.

Can I shower or bath after the operation?

After your operation you will have a small dressing covering your wounds (head and chest). These dressings can be removed two days after the operation. Once the dressings are removed you are able to wash normally. You can use a mild soap or the Octenisan wash (given to you at your pre-admission appointment) and pat the wound dry rather than rubbing it hard. You are advised to wash your towels and pillow cases frequently.

When will my stitches be removed?

There will be stitches on your head and chest wounds. You will need to have these taken out 10 to 12 days after your surgery.

Please make a double appointment with your practice nurse at the GP surgery to do this.

Radiation Therapy

If you should ever require radiation therapy then please alert your physician as the area over the battery / IPG (Implanted Pulse Generator) should be shielded with lead.

Electromagnetic interference (EMI)

Some equipment in home, work, medical, and public environments can generate EMI that is strong enough to interfere with the operation of your DBS system or damage system components.

You should avoid getting too close to these types of EMI sources, which include: commercial electrical equipment (such as arc welders and induction furnaces), communication equipment (such as microwave transmitters and high-power

amateur transmitters), high-voltage power lines and radiofrequency identification (RFID) devices

You are advised that therapeutic magnets such as magnets used in pillows, mattress pads, back belts, knee braces, wrist bands, and insoles may unintentionally cause the neurostimulation system to turn on or off.

Flying

Always take your hand held programmer with you when travelling in case the stimulator is accidentally switched off.

You can travel by plane six weeks after your operation. Please be aware that the magnets used in airport security can turn off your stimulator.

It is important you inform airline staff that you have a stimulator and show them your card. Normally this will allow you to bypass the magnets but, if you are not able to, walk through the centre of them.

Post-operative complications

Following your operation, some pain and swelling would be expected and is perfectly normal. It can be reduced by using a mild pain killer such as paracetamol.

Post-operative side effects are generally mild, temporary and reversible. You may feel some strange sensations such as “electric shocks” and “whooshing sounds”. These are normal and part of the healing process.

You should be aware however that some more serious complications can occur very occasionally in a small number of patients. These include device infection, wire and battery erosion through the skin and lead breakage.

• Infections around the device can potentially be serious. Signs of infection around wound sites (over the leads or the stimulator box) are redness, tenderness and oozing. Also having a fever and being unwell without another obvious cause can be a sign of infection.
• Wire and battery erosion through the skin is a rare occurrence but must not be ignored.
• Lead breakage can occur with minor trauma. It is usually noticed when the effect of the stimulator on one or both sides of the body disappear.

If you suspect any of these or have any concerns, you should contact your GP surgery urgently and seek advice from the DBS team on 01223 217471.

Follow-up plan of care

I am feeling better already. Do I still need to take my normal medication?

After the operation some patients notice an improvement even though the stimulator is not switched on. This is a temporary effect caused by the insertion of the wires in your brain.

You should continue to take your medication as normal or as instructed by the DBS Team until the stimulator is switched on. The stimulator will not be switched on before you go home.

For those taking anti-coagulants, we will advise you when they should be restarted.

Any concerns regarding medication, please contact the DBS nurse specialist on 01223 217471.

What will be my follow-up plan of care?

Two weeks after you leave hospital the PDSN will ring you to assess your recovery. You will also be given a follow-up appointment in the DBS stimulator clinic for six to eight weeks after the operation.

What will be discussed during the telephone call?

The PDSN will ask you questions about your recovery and discuss your current medication regime with you. They will also discuss plans for your follow-up appointment.

What will happen at my follow-up appointment?

Most patients have their stimulator switched on by the neurologist at the first outpatient follow-up after the operation. You will also be given your hand-held programmer and charger (if applicable) at this appointment. Any equipment will be demonstrated at this appointment, and you will be provided with an information booklet.

You may be asked to reduce your medication for a few hours before the stimulator is switched on as this helps get the best settings.

Further appointments will be required to get the best settings and to change medications where necessary. We advise you to bring someone with you toyour appointments.

We also advise you to carry your handheld controller and DBS card with you at all times.

Returning to normal

When can I restart normal activities?

Usually, you can resume normal activities after a few days. You might need to wait a little longer before resuming more rigorous activity. When you will be ready to return to work will depend on your usual health, how fast you recover and what type of work you do. Many patients feel very tired for up to six weeks following the operation.

What activities should I avoid?

Most everyday activities are fine but avoid welding and some sports as these can damage the leads and stimulator box. Examples of the types of sports to avoid include swimming horse-riding, deep sea diving, martial arts and bungee jumping.

Swimming

We recommend you not to swim with your DBS on as some people have found they lose co-ordination in the water due to the stimulation.

When can I resume driving?

If you hold a valid licence you can return to driving when your consultant declares you fit after the operation. You do not need to inform the DVLA of your surgery.

It is safe to wear a seatbelt across your battery.

You are allowed to cycle.

How soon can I fly?

You should not fly for six weeks after your operation. You can then travel by plane. Please be aware that the magnets used in airport security can turn off your stimulator.

Short-term adverse effects of stimulation

These are common and usually reversible with adjustments in stimulation:

• Exacerbation of involuntary movements (dyskinesias) – if medication is not sufficiently reduced to compensate
• Eyelids closing
• Vision problems such as blurred vision or flashes
• Tingling or a sensation of pins and needles in face or limbs
• Dizziness or light-headedness
• Reduced co-ordination or movement problems
• Problems with balance and falls
• Difficulty in maintaining attention or concentration
• Jolting or shocking sensation
• Changes in speech and language, such as problems articulating words, a soft voice or difficulty finding words
• Involuntary muscle contractions (dystonia) can occur in face or limbs
• Anxiety and nausea

Long-term adverse effects of stimulation

These problems have been reported in a small number of patients.

• Weight gain. This can be helped by advice and information from a dietician.
• Depression and apathy. This may be a symptom of Parkinson’s or a side effect of decreased medication after surgery.
• Impulsive and compulsive behaviour. Although this is more often considered a side-effect of some Parkinson’s medication, some patients who have DBS may also experience this, usually to a mild degree. Any changes in behaviour will be monitored by the DBS team.

Long-term device (stimulator-related) problems

• Change of stimulator effectiveness over time. This can occur in PD, as it is a progressive disease.
• Unexplained stimulator switch off. The neurostimulator switches itself off leading to uncontrolled symptoms (the handheld programmer can be used to switch the device back on). This is uncommon but should be reported to the team if it is a recurrent problem.
• Loss of battery strength. The battery generally lasts between three and five years in a non-rechargeable neurostimulator or ten and twenty years in a rechargeable one. The battery can be replaced using simple surgery. You will not need any further brain surgery.

Specific warnings

Mobile phones

Try to avoid carrying your phone in your shirt pocket directly over your device.

MRI scanners

The device may not be compatible with MRI scanners. MRIs can damage the device and can also cause injury to the brain via the stimulator leads. Please check with the DBS team before undergoing an MRI scan and inform the MRI scanning department.

Surgery

If you are having any surgery, please inform your pre-operative team that you have a DBS in place. If you or your surgeon needs further information on this, please contact the DBS Team.

Diathermy

Diathermy is a procedure that uses an electrical current to either warm or destroy tissue depending on the amount of heat generated. It can be used to relieve muscle soreness and sprain but can also be used during surgery to stop bleeding and seal off affected tissues.

There are two types of diathermy: bipolar and monopolar. The diathermy advised for patients who have a DBS system is bipolar diathermy. This is because the electrical current targets the specific area being treated unlike monopolar diathermy.

Patients with DBS systems should not have monopolar diathermy as the electrical current is passed through a larger area of the body which can damage the device and harm the patient.

Contacts / further information

The Functional Neurosurgery (DBS) Team consists of:

• Mr Rob Morris – Consultant neurosurgeon
  Secretary (Nikki Hamburgh): 01223 274263
• Dr Philip Buttery – Consultant neurologist
  Secretary (Teresa Carman): 01223 217554
• Claire Rudwick – DBS nurse specialist
  Direct Line: 01223 217471

Complaints / compliments

Patient Advice and Liaison Service (PALS)

Telephone: 01223 216756 / 257257

Addenbrookes - PALS

Located in the Addenbrooke’s Information Centre

Your information

Name:

Date and Type of Surgery:

Make of DBS:

Model of DBS:

Make / Model of IPG:

Date for removal of dressing:

Date for removal of stitches:

Please make a double appointment with your practice nurse at the GP surgery to do this.

Any concerns please contact:

Claire Rudwick – DBS nurse: 01223 217471

Always take your hand-held programmer with you when travelling in case the stimulator is accidentally switched off.