Considering deep brain stimulation

DBS is the main type of surgery used to treat Parkinson’s. Usually, it’s most effective at improving motor (movement) symptoms, such as tremor, slowness of movement, rigidity and dyskinesia. 

A pulse generator (a device like a heart pacemaker) is placed under the skin around the chest or stomach area. It’s connected to 1 or 2 fine wires that are inserted into specific areas of your brain. 

When the pulse generator 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.

Throughout the procedure, you’ll be supported by a team of healthcare professionals, including a neurologist, neurosurgeon, Parkinson’s nurse and DBS nurse.

The DBS nurse will play a key role in supporting you during all stages of the procedure, from the assessment period through to surgery. They will also provide support and advice to your family and anyone who's caring for you.

Once the surgery is over, the DBS nurse will also support you during the recovery period. They will also help you with managing any long-term care needs resulting from your surgery. This includes checking the settings on your DBS device, and suggesting changes to your medication based on your symptoms. 

DBS isn’t suitable for everyone. But if it’s 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 DBS. 
• It can improve severe tremor, even if your tremor doesn’t respond well to medication. 
• It may significantly improve motor fluctuations, where your mobility varies throughout the day. This can 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 lower the risk of medication side effects, such as involuntary movements (dyskinesia).  
• It may relieve some non-motor symptoms of Parkinson’s, such as sleep disturbance and pain. 
• It could make day-to-day activities easier, such as eating, getting dressed, getting up out of a chair and walking. This will help to increase your independence. 
• It may increase your overall quality of life and for people who support or care for you. 

Many people who have DBS see an improvement in the way their Parkinson’s symptoms affect them. But there are some disadvantages.

• DBS is unlikely to improve any movement symptoms that levodopa doesn’t improve (except tremor. See our ‘Potential benefits of DBS’ section).
• Some people with Parkinson’s have balance problems and speech issues that don’t respond to medication. This includes freezing caused by being in crowded areas or walking in narrow spaces rather than by ‘wearing off’. These types of issues are known as ‘treatment resistant symptoms’ and DBS can make them worse. Specialists will check carefully for these problems before considering surgery. 
• Many people with Parkinson’s have memory problems and other cognitive issues due to the condition. These might also get worse after DBS. Again, specialists will check carefully for these problems. 
• There are potential risks in the surgery itself. These include bleeding or stroke during the procedure. There are also complications linked to having an anaesthetic, although these are rare. 

• You may also experience side effects from the stimulation that targets a specific area of your brain. Find out more in our section on ‘Side effects from programming your pulse generator.’

• Some types of electronic devices can interfere with or turn off the DBS device, including airport body scanners and shop theft detectors. This is because of the strong magnetic fields the machines use. 

There are no official guidelines for who can have DBS. But research shows that having the treatment in the early stages of Parkinson’s may help to slow the progress of symptoms.

DBS for Parkinson’s is recommended if:

• your movement symptoms are seriously impacting your quality of life and ability to perform daily activities
• your movement symptoms respond well to medication (such as levodopa), but it’s become less effective and you have bad ‘off’ periods 
• you’re not experiencing serious issues with memory and thinking, hallucinations, dementia or severe depression

Waiting time for DBS surgery (including the assessment process) will vary from centre to centre.

Once you’ve considered the benefits and disadvantages of DBS, you’ll need to discuss it with your specialist. Together you can decide whether this treatment is the best option for you.  

If DBS is right for you, you'll be referred to a consultant neurologist or surgeon at a hospital that performs the surgery. There you'll be assessed. You may need to stay in hospital overnight during the assessment.

Everyone being considered for DBS needs to go through a careful selection process. This will usually involve assessments of:

• memory and other cognitive functions
• if you have any psychiatric problems, such as severe depression or hallucinations
• if you experience impulsive and compulsive behaviour
• any mobility problems you may have and how these respond to levodopa 
  
   

The assessment process usually takes a few months. It will look at all of your symptoms to determine whether they're likely to improve after having DBS. It also makes sure you don’t have problems which might be made worse by the procedure. 

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. This is sometimes known as the ‘levodopa challenge test’. 

You’ll be asked not to take your Parkinson’s medication for a period of time before the assessment. This allows specialists to get an accurate picture of your symptoms when you’re in an ‘off’ state. They'll also be able to see how much your symptoms improve when you’re ‘on’. 

Being ‘on’ describes when a person’s symptoms are controlled and they’re feeling at their most capable. Being ‘off’ is when Parkinson’s symptoms come back and are at their worst. 

You’ll first be assessed when you’re in your ‘off’ state. You’ll then be given Parkinson’s medication and will be monitored again after this. For some people, this can be difficult, as they have to experience their symptoms when they aren’t under control. You might find this upsetting and challenging.

Some parts of the assessment may be filmed, if you’re happy for this to happen. A film of your assessment gives your specialist a record of your progress before and after surgery. 

Find out more about wearing off and involuntary movements (dyskinesia).

Part 2 

The second part of the process assesses 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 DBS works best for people who have no, or very mild, memory and thinking problems. 

You’ll be asked to complete cognitive tests. This helps the surgical team see any thinking difficulties you have, and to find out what your cognitive abilities are before surgery. These require concentration and can be tiring, but you’ll have short breaks throughout. 

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

 

Results of the assessment 

The specialist will discuss the results of the assessment with you. They'll explain whether DBS could help you, and if so, in what way. They'll also discuss the surgical procedure and follow-up care with you. 

It’s particularly important to talk through your assessment results as DBS doesn’t always work for everyone. Knowing how the procedure is likely to affect you will mean you can come to an informed decision with your specialist. 

 

DBS is currently carried out at 17 centres in the UK. 

You have the right to be referred to any of these centres, even if they’re not near where you live. 

DBS is available at several centres in England and Scotland. If you live in Northern Ireland or Wales, you’ll have to travel to England for surgery. If you live in Scotland, you can have DBS at the National Deep Brain Stimulation Service for Movement Disorders in Glasgow. 

If you do have to travel for surgery, the arrangements for covering your travel and accommodation costs will vary depending on where you live. You should speak to your specialist about this.

You can find a map of all the current DBS centres in the UK on the DBS Nurse Association website.

You should speak to members of the specialist team at your surgical centre, including the neurosurgeon, Parkinson’s nurse and DBS nurse. They’ll be able to answer your questions and listen to any concerns you may have about the procedure.  

During the initial assessment stage, the DBS nurse will explain what you can expect from the surgery and the recovery period.

It’s important that you understand what the procedure involves, the possible benefits and potential risks. Write down any questions you have and take these to your appointment with the specialist. 

You may also want to ask:  

• Am I suitable for DBS? 
• What could be the potential benefits of DBS for me?
• What are the risks of the treatment, and how often have your patients had complications in the past? 
• How is the surgery performed? (For example, will I be under general anaesthetic 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 for the surgery? 
• How long does it take to recover from surgery? 
• How will the surgery affect my condition? 
• How will my medication routine change after the operation?
• How often will I need to come back for treatment after surgery? 
• How often will my DBS battery need replacing?
• Will I need to make changes to my work routine and daily activities?