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.
- In particular, deep brain stimulation can be an effective treatment for severe Parkinson’s tremor, even if the tremor does not 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 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 disturbance 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 will improve your independence.
- It may improve your overall quality of life and that of the people around you.
It’s 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.
Many people who have deep brain stimulation experience an improvement in the way their condition affects them, but there are some disadvantages.
- Deep brain stimulation is unlikely to improve any movement symptoms that levodopa does not improve. (Tremor is an exception)
- Some people with Parkinson’s have balance problems and speech problems that do not respond to medication. These types of issues are referred to as ‘treatment resistant symptoms’ and deep brain stimulation can actually make them worse. Specialists will check carefully for these problems before considering surgery.
- Some people with Parkinson’s have memory problems and other cognitive problems related to the condition. These type of issues might also get worse after deep brain stimulation, so it is important to exclude these problems before considering surgery.
- The risks of the surgery itself include bleeding or stroke during the surgery as well as anaesthetic complications. However, surgical complications are rare.
- You may also experience side effects from the stimulation that targets a specific area of your brain.
- If you’ve had deep brain stimulation, it’s important to know that some pieces of exercise equipment, including certain bikes, cross trainers and rowing machines, can interfere with or turn off the device. This is because of some of the strong magnetic fields the machines use.
Current guidelines from The International Parkinson and Movement Disorder Society state that deep brain stimulation should only be offered to people after they have been diagnosed with Parkinson’s for more than five years. The most important reason for this is that it takes five years until a clinician can be clearer about whether you have Parkinson’s. Before this, you may have another condition that is similar to Parkinson’s, but which would respond poorly to deep brain stimulation.
In rare cases deep brain stimulation can be considered for people who have had Parkinson’s for less than five years, but only after very careful assessment.
Once you have considered the benefits and disadvantages of deep brain stimulation you will need to get full information on the procedure from your specialist. Together you can decide whether deep brain stimulation is the best option for you.
If it is, you will be referred to a consultant neurologist or surgeon at a hospital that performs the surgery. Then, if there is a possibility that you are suitable for deep brain stimulation, you will be fully assessed as either an outpatient or an inpatient.
Everyone being considered for deep brain stimulation needs to go through a careful selection process. This will usually involve assessments of:
- memory and other cognitive functions
- psychiatric problems
- impulsive and compulsive behaviour
- mobility problems and their response to levodopa
The whole assessment process usually takes a few months and it is important to realise that it is not an ‘exam’. It is simply an assessment of all your symptoms to determine whether they are likely to be improved with deep brain stimulation. It also makes sure you don’t have problems which might be made worse by the procedure.
The assessment will usually be in two parts:
The first part of the assessment looks at how well your symptoms respond to Parkinson’s medication.
To do this, you will be asked not to take your Parkinson’s medication for a period of time before the assessment. This is important as it means specialists can 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 come back and are at their worst.
You will first be assessed when you are in your ‘off’ state. You will then be given Parkinson’s medication and will be monitored again after this.
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.
The second 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 different 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 complete 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. These require concentration and can be tiring, but you will have short breaks throughout.
Results of the assessment
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. A scan can also make sure there is no existing damage, such as lesions, 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 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 an informed decision about whether you want to have it.
It is particularly important to talk through your assessment results as deep brain stimulation 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.
Currently, deep brain stimulation is carried out at only 17 centres in the UK. But you have the right to be referred to any of these centres, even if they are not near where you live.
Deep brain stimulation is available in England. You will have to travel to England for surgery if you live in Wales, Northern Ireland and east of Scotland.
You can have deep brain stimulation If you live in the west of Scotland.
If you do have to travel for surgery, the arrangements for covering your travel and accommodation costs for you and a carer vary depending on where you live. You should speak to your specialist about this.
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. If you have general anaesthesia and you are asleep during surgery, you may be briefly woken up to check for improvements in your symptoms. When you speak to staff at the surgical centre, ask them how they carry out the operation.
There are other variations in technique between surgical centres, including:
- choosing the right target site in your brain for placing the leads
- 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 how they do each of these things.
Your main source of information should come from members of the specialist team at your surgical centre, including the neurosurgeon, your specialist and Parkinson’s nurse.
You will have your own questions and concerns about deep brain stimulation. It’s important that you fully understand the procedure involved, the possible benefits and potential risks.
Write down any questions you have and take these to your appointment with the specialist.
Here are some general questions you may also want to ask:
- Am I suitable for deep brain stimulation?
- What could be 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? (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?
- 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?