Deep brain stimulation

This is the main type of surgery used to treat the motor symptoms of Parkinson's.

It involves implanting very fine wires, with electrodes at their tips, into the brain. These are connected to extensions that are tunnelled under the skin behind the ear and down the neck. They are connected to a pulse generator (a device like a pacemaker), which is placed under the skin around the chest or stomach area.

When the device is switched on, the electrodes deliver high frequency stimulation to the targeted area. This stimulation changes some of the electrical signals in the brain that cause the symptoms of Parkinson's.

Deep brain stimulation is a 'non-destructive' type of surgery. This means that it doesn't destroy any part of the brain.

Deep brain stimulation is also reversible in many cases, if no damage occurs during surgery. So, if it isn't successful, the system can be switched off, or removed if necessary. This is different to lesioning surgery, which does cause permanent damage to cells in a target area of the brain.

Deep brain stimulation can work well to control your symptoms, but it won’t stop Parkinson's from progressing and it isn't a cure. Although many people benefit from deep brain stimulation, it isn’t a suitable treatment for everyone with the condition.

If you want to find out whether deep brain stimulation is suitable for you, speak to your specialist or Parkinson's nurse.

You may be referred to a consultant neurologist or surgeon at a hospital that performs the surgery. Once you have seen the specialist, and if there is a possibility that you are suitable for deep brain stimulation, you will be fully assessed.

The specialist will decide whether you would benefit from deep brain stimulation by looking at your specific symptoms and looking at any additional risks of surgery.

The assessment will usually be in 2 parts:

Part 1

The first part of the assessment looks at how well your symptoms respond to Parkinson's medication.

You will be asked not to take your Parkinson's medication for a period of time before the assessment. This is important because your specialist needs to get an accurate picture of your symptoms when you are in an 'off' state and how much your symptoms improve when you are 'on'.

Being 'on' describes when a person's symptoms are controlled and they are feeling at their most capable. Being 'off' is when Parkinson's symptoms recur and are at their most debilitating.

You will first be assessed when you are in your 'off' state. You will then be asked to follow your normal medication regime and will be assessed again when you feel at your best.

The assessments will include some timed tests of your ability to perform certain tasks and movements. Some parts of the assessment may be filmed, if you are happy for this to happen. A film of your assessment gives specialists a record of your progress before and after surgery.

Part 2

This part of the process involves an assessment of your attention, memory, mood and behaviour.

Problems with attention and memory affect many people with Parkinson's, but they affect people in different ways. Studies have shown that deep brain stimulation works best for people who have no or very mild memory and thinking problems.

You will be asked to do cognitive tests to give the surgical team an idea of any thinking difficulties you have and to find out what your cognitive abilities are before surgery. You'll need to concentrate and these tests can be tiring, but you will be able to have short breaks.

Results of the assessment

The process can also involve having an MRI scan of the brain. An MRI scan will help the specialist plan your operation by identifying the area of the brain they will target. A scan can also make sure there is no existing damage or changes in the brain that could make the operation more difficult or risky.

The specialist will discuss the results of the assessment with you. They will explain whether or not deep brain stimulation could help you, and if so, in what way.

They will also discuss the surgical procedure and follow-up care with you. If surgery is an option for you, this will help you make a fully informed decision about whether you want to go ahead.

Deep brain stimulation is only carried out at certain centres in the UK. You have the right to be referred to any of these centres, even if they are not near your home.

Currently, people living in Wales, Northern Ireland or the east of Scotland have to travel to England for surgery. If you do have to travel for surgery, the arrangements for paying transport and accommodation costs for you and a carer vary depending on where you live. You should speak to your specialist about this.

Research has shown that surgery improves quality of life in people with advanced Parkinson's whose symptoms are no longer controlled by medication, or are not controlled as well as they were before.

Deep brain stimulation can also help people who experience lots of side effects from the medication they take.

Surgery is normally performed in the later stages of Parkinson's, but recent studies have found that some people may benefit from deep brain stimulation earlier. Research into the most effective time to have surgery is ongoing.

Researchers are also looking at the long-term effects of surgery, and whether it is more cost effective than medical therapy alone.

Deep brain stimulation isn't suitable for everyone, but if it is right for you, you may experience a number of benefits.

• It may help control your movement symptoms for a longer period of time than medication alone. The motor symptoms that responded well to medication before surgery are the most likely to improve with deep brain stimulation.
• It may significantly increase the number of hours you spend in an 'on' state each day, when your symptoms are well controlled.
• It should mean your Parkinson's medication can be significantly reduced. This will reduce the risk of medication side effects, such as involuntary movements (dyskinesia).
• It may give you some relief from non-motor symptoms, such as sleep problems and pain.
• It may improve your ability to perform day-to-day activities, such as feeding and dressing yourself, getting up out of a chair and walking. This may improve your independence.
• It may improve your quality of life and that of those around you.

It is important to remember that deep brain stimulation is not a cure. As with all treatments currently available for Parkinson's, deep brain stimulation will simply help to manage your symptoms.

This means that you will almost definitely still need to take some medication, and while deep brain stimulation should help control movement symptoms, it will not stop the condition from progressing.

It is unlikely to improve any movement symptoms that levodopa does not improve.

Like any surgery, there are potential risks with deep brain stimulation.

Although the chance of any complications is small, your specialist should discuss all of them with you before you agree to go ahead with surgery.

Risks include:

• medical complications from the general anaesthesic, such as chest infection, deep vein thrombosis (a clot in the leg) and pulmonary embolism (a clot that can lodge in the lungs)
• speech problems
• wound infection
• feeling confused or losing your sense of where you are after your operations
• excessive bleeding (haemorrhage)
• seizure (fits)
• stroke
• death

Short-term side effects

There are some side effects that are caused by the stimulation current spreading to areas of the brain, other than the target area. These may include:

• tingling or a sensation of pins and needles
• changes in speech or language, such as problems articulating words, a soft voice or difficulty finding words
• dizziness or light-headedness
• involuntary muscle contractions (dystonia or dyskinesia)
• problems with balance and falls
• movement problems or reduced co-ordination
• jolting or shocking sensations

These side effects should disappear completely when the electric current is reduced or stopped.

Long-term side effects

Over time, the following problems might happen:

• Loss of battery strength. The battery generally lasts 3-5 years in a non-rechargeable neurostimulator and 9-10 years in a rechargeable neurostimulator. The neurostimulator can be replaced using relatively simple surgery and it is unlikely you will need any more brain surgery.
• Electrodes or extension leads break or the current leaks.
• The neurostimulator switches off. This will lead to symptoms being uncontrolled. But you can easily switch it back on if you have a hand-held programmer.
• Depression and apathy. This may be a symptom of Parkinson’s or a side effect of reducing medication after surgery or stimulation.
• Weight gain. A dietitian will be able to offer advice. Find out more about diet and Parkinson's.

Impulsive and compulsive behaviour

Although it is more often considered a side effect of some Parkinson's medication, some people who have had deep brain stimulation may experience impulsive and compulsive behaviour.

Impulsive behaviour is when a person can't resist the temptation to carry out activities that could lead them to harm themselves or others. This includes a strong urge to gamble, shop or binge-eat.

Some people with Parkinson's experience hypersexuality, where they become so preoccupied with sex that it can cause problems with their work or personal life. In many cases, this behaviour is out of character.

Compulsive behaviour is when a person has an overwhelming drive or urge to act in a certain way, often repetitively, to reduce the worry or tension that they get from that urge. This can include collecting, sorting and organising objects.

If they are not managed, these behaviours can have a devastating impact on the person with Parkinson's and those around them.

It is important that those who are considering deep brain stimulation are assessed by a healthcare professional for any potential risk of impulsive and compulsive behaviour before they are treated.

There are certain factors that may mean you are more likely to experience this behaviour. These include a family history of gambling or alcohol abuse, a personal history of addictive behaviour, being male, being a younger person with Parkinson's, being a smoker, being single and living alone.

Even if a person with Parkinson's doesn't fall into any of these categories, their behaviour should be monitored over time. Sometimes people who experience impulsive and compulsive behaviour may not realise they have a problem.

If you are a carer or a family member and you notice any unusual behaviour, talk to the person with Parkinson's and seek support from their healthcare professional.

During surgery, 2 thin, insulated wires (each with electrodes known as 'contacts') are inserted into the brain.

Rarely, when the symptoms mainly affect one side of the body, these leads are only inserted on one side of the brain. The lead implanted in the left side of the brain controls symptoms affecting the right side of the body and the lead implanted in the right side of the brain controls symptoms on the left side of the body.

The wires can be inserted into particular parts of the brain depending on a person's individual symptoms.

Surgery is performed in a different way at each surgical centre. It will either take place under general anaesthetic (with the person asleep) or with the person awake for part of the procedure. When you speak to staff at the surgical centre, ask them how they carry out the operation.

Depending on the technique used, the procedure is either completed during 1 or 2 operations. There are other variations in technique between surgical centres, including:

• how the target site is located for placing the lead in the brain
• whether or not your hair is shaved
• when the stimulator is switched on and programmed

The team at your surgical centre can give you more information about these issues.

What devices are used in deep brain stimulation?

There are a number of deep brain stimulation devices available, which are made by different manufacturers. The team at your surgical centre will explain which devices are available and the advantages of each one.

There are a few differences between each device, but the main difference is that there are rechargeable and non-rechargeable devices.

Non-rechargeable neurostimulator

The non-rechargeable battery for this device is stored within the neurostimulator.

On average, the battery lasts 3-5 years. Some may last longer before a replacement is needed.

Rechargeable neurostimulator

The rechargeable battery is stored within the neurostimulator. If you have a rechargeable neurostimulator implanted, you will be given and taught how to use a recharging unit.

The neurostimulator will need recharging regularly and you will need to take your recharging unit with you if you are going to be away from home for more than a few days. Depending on the device, the battery will last at least 9 years before it has to be replaced.

There are precautions that need to be taken with each device (as with a pacemaker), but these will vary depending on the manufacturer and model. The team at your surgical centre will be able to give you information specific to your device.

Programming

Your specialist or Parkinson's nurse will programme the stimulator using a small portable computer.

During a programming session, an antenna attached to the computer is held over the area where the neurostimulator is, to communicate with it. The nurse or specialist will assess how your symptoms change as they try different settings on the neurostimulator. They will then programme the stimulator to the setting that best controls your symptoms.

The stimulator may continue to be adjusted and your medication reviewed. You will be given instructions on how to use your own programmer. This will allow you to adjust the stimulation and check the battery life.

You may also be given the option to make some changes to the settings. It may take several months to fully programme the stimulator and adjust your Parkinson's medication to get the most benefit from your treatment.

How long do you stay in hospital after deep brain stimulation surgery?

You will usually need to stay in hospital for at least a week after your surgery.

Before you are discharged, healthcare staff should assess what support you may need when you leave hospital. If you or your healthcare professional identify any support needs, these should be recorded in a written care plan. You should not be discharged until the support you need has been put in place.

If you are concerned about arrangements for going home after your hospital stay, you should speak to a hospital social worker.

Find out more about going into hospital when you have Parkinson's.

Healthcare professionals

If you go into hospital in the future, make staff aware that you have had deep brain stimulation surgery.

You should also tell any other healthcare professionals you see that you have a deep brain stimulation system implanted. This includes dentists and physiotherapists.

Diathermy – the use of a high frequency electronic current to produce heat, often used for muscle relaxation – should not be used if you have had deep brain stimulation surgery.

MRI scans can only be used under very strict conditions.

Antibiotics have to be prescribed when there is a risk of germs getting into your blood stream. For example, during dental procedures or other surgery. Your specialist or Parkinson's nurse can advise healthcare professionals on this before antibiotics are prescribed.

Most everyday activities are safe, but there are some that could damage your implanted deep brain stimulation system. You should talk to your specialist about this.

Airline staff

You can travel by plane, but you should inform airport security and carry a card with you that explains you have had deep brain stimulation.

Ask your healthcare professional if they can provide one for you. You should also carry the hand-held programmer with you when travelling, in case the stimulator is accidentally switched off.

Your main source of information should be members of the specialist team at your surgical centre, including the neurosurgeon, your specialist and Parkinson's nurse.

You will, of course, have questions and concerns about deep brain stimulation. It is important that you fully understand the procedure and the possible benefits and risks.

Write down any questions you have and take these to your appointment with the specialist. Here are some questions you may wish to ask.

• Am I suitable for deep brain stimulation?
• What are the potential benefits of deep brain stimulation for me?
• What are the risks of deep brain stimulation and how often have your patients had complications in the past?
• How is the surgery performed? Will I be asleep during the procedure or will I be awake for part of it?
• How long will I have to wait for surgery?
• How long will I be in hospital?
• How long does it take to recover from surgery?
• How will the surgery affect my condition?
• How will my medication regime change after the operation?
• How often will I need to come back for treatment after surgery?
• How often will my deep brain stimulation battery need replacing?

There is a lot of information about deep brain stimulation available on the internet and in publications. But the differences in the surgical techniques and approaches used in each surgical centre mean that not all of this information will necessarily be correct or relevant for you.

Our peer support service may be able to put you in touch with a trained volunteer who is affected by Parkinson's and who has experience of deep brain stimulation. 

A specialist will carefully consider whether surgery is suitable for each individual person – remember that it is not suitable for everyone.

Choosing whether to have surgery for Parkinson's is often not an easy decision, and there are a number of factors to consider. If you are close to the person with Parkinson's, it's likely that you will be involved in this process, and the results of the surgery may have an impact on you too.

As everyone experiences Parkinson's differently, each person will react differently to surgery. Talk about what might happen before, during and after the procedure with your loved one’s specialist or Parkinson's nurse, to make sure all of your concerns are addressed. It can be helpful to write down your questions and take them with you to the appointment.

how might things change after someone has deep brain stimulation surgery?

After deep brain stimulation surgery, there will be an initial period of healing, where, like anyone who has had surgery, a person with Parkinson's may need additional care and attention.

After this period, there will be another appointment at the surgical centre, where the stimulator will be turned on. It will be adjusted to achieve the best possible control over the person's Parkinson's symptoms. This may take some time and involve a few visits.

Once this has happened, there should be an improvement in the person's symptoms and they should find it easier to perform some day-to-day activities. If you help with daily tasks, you may find they need less help at this point.

Many people will be able to significantly reduce the amount of medication they take, and their medication regime may become less complicated. It is important to remember, however, that the condition will continue to progress.

What side effects of deep brain stimulation should I look out for?

The results of the procedure will be monitored over time, and you can play an important part in this by tracking any changes in the person's symptoms.

It may be useful to keep a diary so you remember these changes and can discuss them with the specialist or Parkinson's nurse at follow-up appointments, along with any concerns.

Looking after yourself 

If you're a carer, it's important to look after yourself while the person you care for is preparing for surgery, during their stay in hospital and once they are discharged. 

Breaks from caring are often called 'respite care'. This care can vary from a few hours’ break to a longer holiday. Your local authority has a responsibility for arranging services that can help you to take a break from caring.

Find out more about support for you as a carer.