Sphenopalatine ganglion (SPG) stimulation for the treatment of cluster headaches

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1 Headache Centre Sphenopalatine ganglion (SPG) stimulation for the treatment of cluster headaches This leaflet is for patients, family and carers. It explains about the benefits, risks and any alternatives to SPG treatment. It also gives information on what you can expect when you come to hospital. It is not intended to replace discussion with your consultant. If you have any further questions, please speak to a doctor or nurse caring for you. What are cluster headaches? Cluster headaches are one of the most severe types of headache pain. There are many medicines that can be used to help reduce the number of cluster headaches that a person has or to control individual episodes when they occur. However, sometimes these are not suitable, effective or appropriate. In these cases, a therapy called sphenopalatine ganglion (SPG) stimulation may help. What is SPG stimulation therapy? The SPG is a nerve bundle located behind the nose and is part of the nervous system. The SPG is directly involved in the cluster headache pain pathway. Direct stimulation of the SPG interrupts nerve signals that cause cluster headache pain. SPG stimulation therapy is delivered by a small device which is put into place in your cheek via a procedure through your gum. The implanted device is smaller than a 1p coin, and the procedure leaves no visible scars. After the device is implanted it cannot be seen and most patients find it to be comfortable or cannot even feel it. When patients experience a cluster attack, they simply put an external remote controller (similar in size to a smart phone) next to their cheek to deliver on-demand stimulation. Why should I have SPG stimulation therapy? Some patients experience cluster headaches less frequently. Many patients using SPG stimulation therapy have been able to resume their normal activities and have experienced significant improvements in their quality of life. What are the risks? All treatments and procedures have risks, and your surgeon will talk to you about the risks of SPG stimulation therapy beforehand. If you are unsure about anything that has been said to you, a member of the team will be happy to answer your questions. 1 of 5

2 Possible problems can include: temporary swelling of the cheek or face tingling, numbness, sensitivity or pain in the jaw or cheek. This usually only lasts for a few weeks or months. delayed infection Sometimes the position of the device may need to be adjusted to get it to work better and this may require further surgery A cluster headache may happen immediately upon waking up after surgery. Are there any alternatives? Alternative treatments depend upon your specific condition and include therapies suggested by your headache specialist, GP and pain management team. If you choose not to have surgery we will refer you to the appropriate person to discuss other treatments options. How can I prepare for the surgery? We will ask you to monitor your headache attacks and pain levels in a diary in the time period leading up to the procedure and also following it. This will help us to check the effect the procedure has in individual patients. You should continue taking your medications as normal, unless your headache specialist tells you otherwise. If you are unsure whether you should take a new type of medicine, please contact us before you do so (contact details at the end of the leaflet). Before the procedure you will have a CT scan of your head. For more information about this, please ask for a copy of our leaflet, Having a CT scan. The scan is used by your surgeon to prepare for your surgery and to get the best fit for the stimulator device. You will also have a dental x-ray for us to ensure that your mouth is in good condition before the surgery. You will be seen for a pre-assessment appointment a few weeks before the planned surgical date to check that you are fit enough for surgery. You may take this opportunity to clarify any concerns you have over which medications you should take. Please make sure that you bring all of your usual medications with you on the day of your surgery, including any emergency treatments for your cluster headaches (such as sumatriptan injections). Consent asking for your consent We want to involve you in decisions about your care and treatment. If you decide to go ahead, you will be asked to sign a consent form. This states that you agree to have the treatment and you understand what it involves. If you would like more information about our consent process, please speak to a member of staff caring for you. 2 of 5

3 What happens during and after the surgery? The procedure to insert the device in your cheek is done in an operating theatre. While you are under general anaesthetic (asleep), your surgeon will make a cut about two centimetres long in the upper gum above the teeth on the side where you suffer your cluster headaches. The stimulator device is then carefully inserted through this cut until it is tucked into the space underneath the cheekbone. The device will be positioned close to the SPG nerve bundle so that it is able to stimulate it. Once your surgeon is satisfied with the position of the device, it is tested to make sure it is working, secured to the bone and then the wound is closed with stitches. The surgical part of the procedure rarely takes more than half an hour and is similar in many ways to dental surgery. After your surgery, you will need to have a further scan of the head to provide information which is used in programming the device. You will need to stay in hospital for at least one or two nights after the surgery. You will be able to eat, drink and brush your teeth as normal as soon as you feel comfortable to after the general anaesthetic. If you wish to use mouthwash, we would recommend only using one which contains chlorhexidine. The stitches in your mouth are soluble (will dissolve in a few days) so should not need to be removed by a healthcare professional. You can help to loosen them by gently brushing them with a toothbrush after 5 to 7 days, if you do not find this uncomfortable. Will I feel any pain? Immediately after the surgery you will have some numbness in the cheek and mouth for a few hours, due to the local anaesthetic that is given during the surgery. Once this has worn off, you may feel some pain around the wound site for a few days afterwards. Over-the-counter painkillers (such as paracetamol or ibuprofen) should be sufficient to help manage any wound pain. If you experience a worsening of pain around the wound area in the first days or weeks then please contact your medical team (see details below) or your GP. Some patients may experience tingling, sensitivity or numbness in the jaw or cheek for a few weeks or months after the surgery and this is normal for operations performed on this part of the body. This usually fades gradually on its own. Are there any warning signs or symptoms I should know about? Please contact your surgeon s team urgently if you have any of these signs or symptoms: bleeding increasing pain around the surgical area raised body temperature (fever) above 37.5 c When can I use the SPG stimulator? You will not be able to use the device while your gum heals about a month. When the wound is healing well, your doctor and a specially trained technician will program the therapy device during one or more outpatient visits. The stimulator device has no batteries in it but is powered and controlled by a handheld remote control that you hold to your cheek. The doctor or technician will show you how to use the remote control and will help you to find which settings provide the best stimulation. When the settings are correct, patients usually feel a buzzing or tingling sensation in their palate or behind their nose when they activate the device. When the device is not activated it causes no sensations and is not noticeable. 3 of 5

4 Most patients use the device when they feel a cluster headache about to start. In the majority of cases a few minutes of stimulation will cause the pain of the cluster headache to reduce to a low level or totally disappear. Some patients find that the number of attacks they experience reduces significantly. What do I need to do after I go home? You should be able to return to normal activities, including work, three to four days after the surgery if there have not been any complications during your recovery. As with any procedure involving general anaesthetic, you should avoid making any important decisions for the first day or two after you are discharged. The device still allows you to pass freely through theft detectors or security devices, including metal detectors and x-ray screening machines in shops or airports. It is approved to allow you to get a full body MRI. Some contact sports (such as boxing) could cause damage to your stimulator so they should be avoided. Will I have a follow-up appointment? The surgeon will see you approximately two weeks after the surgery, to check that the wound is healing and you are well. You will then be seen around four weeks after the surgery for the device to be switched on and programmed. Follow-up appointments will usually be in the Pain Management Centre, in Gassiot House at St Thomas Hospital. If there are any problems with the device between routine appointments, you should be prepared to attend St Thomas Hospital to be reviewed, as your GP and local hospital will not be familiar with this device. Tips for improving the success of the treatment Check every day to make sure your remote controller is well charged If you think the SPG stimulator isn t working as well as it used to, please mention this to your headache specialist. If the stimulation therapy provides relief and you would like to reduce or change your medications, please discuss this with your doctor first. 4 of 5

5 Contact us If you have any questions or concerns about your treatment, please contact the nurse, t: (voic ) or e: Monday to Friday, 9am to 5pm. We prioritise by medical urgency, but aim to respond to all messages within a couple of days. For any administrative queries regarding appointments or admissions, t: or e: gst-tr.painappointmentandadmissions@nhs.net If you have a significant medical problem or require urgent medical assistance, contact your GP first. If you think it is an emergency, please go straight to your nearest Emergency Department (A&E) or call 999. For more information leaflets on conditions, procedures, treatments and services offered at our hospitals, please visit Pharmacy Medicines Helpline If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our helpline. t: , Monday to Friday, 9am to 5pm Your comments and concerns For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS). To make a complaint, contact the complaints department. t: (PALS) e: pals@gstt.nhs.uk t: (complaints) e: complaints2@gstt.nhs.uk Language and accessible support services If you need an interpreter or information about your care in a different language or format, please get in touch. t: e: languagesupport@gstt.nhs.uk NHS 111 Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day. t: 111 NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: Get involved and have your say: become a member of the Trust Members of Guy s and St Thomas NHS Foundation Trust contribute to the organisation on a voluntary basis. We count on them for feedback, local knowledge and support. Membership is free and it is up to you how much you get involved. To find out more, please get in touch. t: e: members@gstt.nhs.uk w: 5 of 5 Leaflet number: 4613/VER1 Date published: September 2018 Review date: September Guy s and St Thomas NHS Foundation Trust A list of sources is available on request