Deep Brain Stimulation for Dystonia and Tremor Discharge Advice Sheet

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1 Deep Brain Stimulation for Dystonia and Tremor Discharge Advice Sheet UHB is a no smoking Trust To see all of our current patient information leaflets please visit

2 Brain swelling Many patients experience immediate reduction in their symptoms after surgery. This is due to brain swelling, which can last from a few days to a few weeks. Patients commonly have headaches and neck pain after surgery. You may wish to take mild painkillers such as paracetamol. It is advisable to regularly move your neck from side to side. It may take a few weeks for your energy levels to return to normal. Vigorous activity may cause an increase in headaches and fatigue. Letter for GP You will be given a discharge summary explaining the procedure you have had done. One copy is for you to keep and one copy is for your GP. Medication You will continue to take all medication that you were prescribed before your operation. 2

3 Wound care There are one or two wounds on the top of your scalp, one just behind the ear and one on the left/right side of your chest. You will need to arrange an appointment with your GP practice nurse or district nurse to remove the clips from your wounds. Clips need to be removed seven days after your operation. (The ward nurses will issue you with a clip remover which you will need to give to the practice/ district nurse so that he/she can remove the clips). Please do not get the surgical wound area wet until after clips have been removed. For the first 4 6 weeks post surgery it is advisable to wash your hair using very mild shampoo, such as baby shampoo. 3

4 Recognising signs of an infection Any leakage from any of the four wounds Redness, soreness or swelling An unpleasant odour from the wound A fever or high temperature If you experience any of the above symptoms please contact the movement disorder nurse specialist immediately on This is the same number to call after hours and at weekends. Follow the instructions on the recorded message. Seek immediate medical help if you experience the following Severe headache, continued lethargy or double vision Weakness or numbness down one side of your body Difficulty swallowing or speaking A seizure Deep brain stimulator activation and follow-up care Tremor patients We often see a significant reduction in tremor post surgery due to brain swelling therefore we do not activate the stimulator until the tremor has re-emerged to pre-op severity. The time scale is variable, anything from 2 days to a few months post surgery. Dystonia patients Patients report an improvement in dystonia related symptoms immediately after surgery. The improvements can last from 2 days to 2-3 weeks post surgery, we therefore wait till the symptoms have reemerged before activating the stimulator. 4

5 As the symptoms re-emerge you will need to contact the movement disorder nurse specialist to have your stimulator activated. On the day of stimulator activation you will be admitted at 09:30 as a day case patient. The movement disorder nurse specialist will talk you through each stage of the testing: The stimulator will be switched on and each contact on the electrode will be tested individually commencing at 0.5 volts. The minimum voltage will be recorded for symptom management The minimum voltage will be recorded for side effects Each threshold that induces transient or other side effects of stimulation will be recorded You will be monitored for potential adverse reactions to stimulation. These include: Tingling or pins and needles in the face or limbs this can be transient Fuzzy head Muscle spasms Alteration in speech Double/blurred vision Eye deviation Once all eight contacts have been tested the neurosurgeon will see you. Based on the information gained during the trialling of electrodes, the neurosurgeon and the movement disorder nurse specialist will then make a combined decision on which contacts are to be used for stimulation. We will activate the stimulator to a maximum of 2.5 volts and make no further alterations for at least 4 weeks. After 4 weeks you will be given a hand-held device (we will teach you how to use this.) The device will allow you to increase voltage within set parameters should your symptoms require further stimulation. 5

6 Future follow-up appointments will be annual review arranged by the hospital or patient initiated review. We want our patients to utilise clinic visits to their best advantage. They can do this by setting an agenda so that each visit will meet their needs. We would like our patients to come prepared with a list of questions and concerns and describe any new symptoms since their last visit. Telephone helpline The movement disorder nurse specialist operates a telephone helpline from 09:00 17:00 Monday Friday. Telephone number:

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8 We would kindly like to acknowledge Medtronic for providing the image. The Trust provides free monthly health talks on a variety of medical conditions and treatments. For more information visit or call Contact details Jamilla Kausar Movement and Disorder Nurse Specialist Independent and Supplementary Prescriber Level 7, Area 3 Queen Elizabeth Hospital Birmingham Mindelsohn Way Edgbaston Birmingham, B15 2GW Telephone: Jamilla.Kausar@uhb.nhs.uk Fax: PI18/1261/03 Author: Jamilla Kausar Date: October 2018 Review date: October 2020