The Leeds Teaching Hospitals NHS Trust Deep Brain Stimulation for Dystonia, Essential Tremor and Parkinson s disease

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1 n The Leeds Teaching Hospitals NHS Trust Deep Brain Stimulation for Dystonia, Essential Tremor and Parkinson s disease Information for patients

2 What is deep brain stimulation (DBS)? DBS is a surgical procedure which is used to treat movement disorders such as Parkinson s disease (PD), dystonia and essential tremor. Surgery involves inserting narrow electrodes (wires) into the brain which are connected to a battery implanted under the skin in the chest or abdominal area that generates the power. When the battery is turned on and programmed it gives continuous electrical stimulation to a targeted area of the brain. How does DBS work? Stimulation given by the device changes some of the electrical signals in the brain that help alleviate the symptoms of some movement disorders. Each person responds differently to surgery. What are the benefits of DBS? Parkinson s disease It may help control the symptoms for a longer period of time than medication alone. Symptoms that responded well to medication before surgery are the most likely to improve with DBS. It may also increase the number of hours in an on state each day. It could mean that your PD medications could be significantly reduced, which would reduce the risk of side effects, such as involuntary movements (dyskinesia). 2

3 Deep brain stimulation is not a cure for PD although it can help to control the condition. You will probably still need to take some medication. It is important to remember it will not stop the condition from progressing and is unlikely to improve any symptoms that levodopa does not improve. Dystonia The electrical stimulation has a beneficial effect on involuntary muscle contractions causing abnormal and sometimes painful movements and postures. The surgery is not a cure but most people find the dystonia improves slowly over several months after the operation. Each person responds differently to surgery. DBS is likely to be discussed when oral medication and botulinum toxin injections are not providing adequate control. After having surgery some patients will still need to continue with the botulinum toxin injections, some patients can discontinue the injections once the stimulator is adjusted to the optimum settings. Essential tremor An improvement in tremor is normally seen immediately after DBS surgery, although it may take time for the full benefits to be seen. Studies have shown that DBS is very effective, with nearly 70% of patients reporting a total or substantial reduction of their tremor. Am I suitable for DBS? The Consultants (Neurologist and Neurosurgeon) will carefully consider whether surgery is suitable for each person and carry out a detailed assessment to find out if you would 3

4 benefit from DBS. The Consultant will decide this by looking at your symptoms and at any additional risks of surgery. It is important to remember it is not suitable for everyone. What happens before surgery? You will be seen by the Neurosurgeon who will discuss the potential benefits and risks involved. Prior to surgery you will have detailed assessments carried out by a team of specialists who will check you are suitable for surgery and prepared for the operation. You will need to have an MRI brain scan before your operation sometimes under general anaesthetic. You will need pre-surgical investigations which are likely to involve blood tests, an ECG, MRSA screening. You will also require a detailed cognitive assessment performed by a Neuro Psychologist to look at your attention, memory, mood and behaviour. Once the above are done then the consent process will be completed. Who is involved? A team of specialists will be involved with your care who include: Consultant Neurologist Consultant Neurosurgeon Neuro Psychologist Neuro Radiologist Specialist Nurse 4

5 What happens during your hospital stay? You will be admitted to the neurosurgery ward 1-2 days before surgery, usually at the weekend. This will give you an opportunity to discuss any further questions or concerns. You will be have a short stay in hospital, probably 2-3 days following surgery to allow you to recover. What happens on the day of the operation? You will be requested not eat or drink from midnight. You will be escorted to theatre where you will be anaesthetised (asleep during surgery). A metal frame will be fitted to your head following this you will have a brain scan. The information from this scan will help the surgeon to target the area of the brain which is causing your symptoms. When the DBS is treating PD tremor or essential tremor the operation maybe carried out under local anaesthesia (you will be awake during the surgery) this will aid the neurosurgeon with the insertion of electrodes and assist the Neurosurgeon to monitor for side-effects during surgery. If the operation is carried out under general anaesthesia (you will be asleep), the position of the wires is determined using the micro electrical recordings from the brain. The leads connected to the electrodes come out of the skull and are passed under the skin, down the neck and connected to a battery usually in the chest. The wires and battery can be felt under the skin but not visible under clothing. You will then have another scan before going home to check the position of the electrodes. 5

6 What are the risks of the operation? The risks of these potential side-effects are low, approximately 2-5%, these are: Speech problems Confusion or disorientation after your operation Wound infection / infection of the electrodes or battery which may require removal of the device Failure of the electrodes Seizures Haemorrhage (excessive bleeding) Stroke General anaesthetic risks such as chest infection, deep vein thrombosis and pulmonary embolism (not specific to this procedure) Death (0.1 %) Possible side effects of DBS: Tingling sensations Speech problems Double-vision Dizziness Worsening of symptoms Abnormal muscle spasms or reduced coordination Jolting or shock sensations many of the side effects related to stimulation can be managed by adjusting the stimulator settings. 6

7 Behavioural symptoms including depression, mania and psychosis. The risk is higher if you have had these problems in the past so it is important to discuss this with your consultant. These symptoms are potentially reversible for example by changing the stimulation or using psychiatric therapies. Broken or faulty wires which may require replacement of electrodes. What happens after DBS surgery? You may feel tired for 4-6 weeks while you recover. We will usually wait a few weeks following surgery before turning on your DBS system. This will allow for your recovery and for any swelling following the operation to settle down. You will need to attend regular hospital appointments following surgery to have the settings on your DBS system altered to find the correct levels for you. The battery for your DBS system will need to be changed when it begins to run low. This is usually performed as a day case procedure. The lifetime of your battery will depend on what battery is implanted, which maybe done under a local or general anaesthetic. A re-chargeable battery can be used which has a longer lifetime but will require charging regularly. It is important to keep your surgical wounds clean and dry until they have healed. You will be advised to monitor for any signs of infection such as redness, swelling or leakage around your wound sites. The clips/stitches can be removed 7-10 days following the surgery at your GP practice. If you have any concerns about 7

8 wound infection please contact the team immediately. If it is out of hours you should contact your GP, alternatively you could contact the 111 number for advice or visit your nearest emergency department (A&E) Are there any activities I can t do after DBS? Following DBS surgery there are a few activities that should be avoided such as: Extreme sports and rollercoaster rides: the leads may become dislodged within the brain. If deep sea diving you should not dive below 33 feet of water or enter hyperbaric chambers above 2.0 atmospheres absolute (ATA) as pressures below 33 feet of water or above 2.0 ATA could damage the DBS system. Magnetic Resonance Imaging (MRI) and diathermy. You will still be able to have MRI scans a type of scan but under strict conditions. Prior to any medical or surgical procedures you should inform your Dr as there are certain procedures that should be avoided with DBS. Diathermy should be avoided as this can cause harm to the device. Mammograms / X-ray: although the radiation is not enough to affect the DBS, it is important to ensure the skin is not pulled too tightly, please inform the person doing the mammogram so that they can position you correctly. Ultrasound can be used providing the treatment is not close to the battery site. Antibiotics: If you are having any dental procedures or surgery that could potentially cause infection it is advisable to have a cover of antibiotics. Security and travelling: Security devices such as shop detectors 8

9 or airport devices can activate the DBS. It can cause the DBS to turn on or off, but it will not cause any damage to you or the DBS. You can travel by plane once you have fully recovered from the operation, but you should inform airport security and carry a card with you that explains you have had deep brain stimulation. You should also carry the hand held programmer with you when travelling in case the stimulator is accidentally turned off. Remember that you will need to have medical insurance and they will need to be informed that you have a DBS device. Saunas / Jacuzzis / steam rooms and tanning beds: it is best to avoid saunas / Jacuzzis / steam rooms and tanning beds as they can cause the DBS device to heat up. Driving: you should not drive following DBS surgery until you have seen the Neurologist/Neurosurgeon at the follow up appointment. You do not need to tell the DVLA specifically about your operation. Usually you will be allowed to drive after surgery unless there is a particular problem which would make it unsafe. 9

10 Where can I get more information? Parkinson s disease nurse specialists Dystonia nurse specialist on European Parkinson s Disease Association Parkinson s UK The Dystonia Society National Tremor Foundation L25 neurosurgery ward based at Leeds General Infirmary epda.eu.com parkinsons.org.uk dystonia.org.uk tremor.org.uk Glossary Anaesthesia general and local Medications are used to send you to sleep during the operation so you are unaware of the surgery and do not move or feel any pain while it is carried out. Local anaesthetic involves numbing areas of the body so you do not feel pain but may feel some pressure or movement. Diathermy Diathermy is used in surgery to deliver heat directly to the deeper tissues of the body. During an operation heat produced by diathermy cauterizes blood vessels to prevent excessive bleeding. 10

11 Dopamine This is a chemical made by certain cells in the brain. Dopamine plays a big part in movement, cognition and mood. People with Parkinson s disease don t have enough dopamine because the cells have died. Dyskinesia These are involuntary movements, often a side effect of taking levodopa for a long period of time. Dystonia A movement disorder, it is a sustained, involuntary muscle contraction that can affect different parts of the body. Electrocardiogram (ECG) Stickers are applied to your chest, arms and legs to record a trace of your heart rate. Essential tremor Is a movement disorder that typically involves a tremor of the arms, hands or fingers but sometimes involving the head, vocal cords or other body parts during voluntary movements such as eating and writing. Levodopa This is a natural amino acid that the brain converts into dopamine. Drugs containing levodopa are often used to treat Parkinson s disease. 11

12 Magnetic Resonance Imaging (MRI) This is a scan used to look at the structure of the brain or other parts of the body in detail. MRSA (methicillin-resistant Staphyloccus aureus) Is a bacteria resistant to certain antibiotics. Screening swabs are taken from the nose, groin and armpits at pre-surgical assessment. On/off This describes the quick changes to mobility that can affect people with Parkinson s disease. When a person goes off their symptoms are not controlled and they may find it difficult to move. They may switch on after taking a dose of medication and find that they are more able to move. Parkinson s disease Is a degenerative disorder of the nervous system which can affect movement, symptoms can include tremor, rigidity, slowness of movement and difficulty with walking and gait. The Leeds Teaching Hospitals NHS Trust 1st edition (Ver 1) Developed by: Jenny Rochester Parkinson s disease CNS, Rachel Lally, Dystonia CNS, Mr Siva Kumar Consultant Neuro Surgeon, Dr Jane Alty and Dr Stuart Jamieson Consultant Neurologists, and, Department of Neurosciences. Produced by: Medical Illustration Services MID code: M _011/JG LN Publication date 03/2017 Review date 03/2019