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Discharge instructions after Brain Tumour Surgery This pamphlet was developed to give you information about: • Your care at home after your brain tumour surgery, and • Contacting health care providers if you have questions/concerns It is important for you to feel confident and comfortable while you recover at home, please let us know if we can help. Who to call with your questions or concerns: Day time: Monday to Friday Brain Tumour Clinic: (514) 398 – 5937 Neurosurgeon’s Office: (514) 398 – Dr. Secretary’s name Clinical Nurse Specialsts: Catherine-Anne Miller clinic: (514) 398-5937 office: (514) 398-1966 Maria Hamakiotis clinic: (514) 398-5937 office: (514) 398-6644, local 089817 After 4:30 pm (16h30) Emergencies only Neurosurgery Resident: dial (514)-934-1934 local 53333 and ask “locating” to have the Neurosurgery Resident on Call paged. Emergencies only please. 1 Care At Home Following Surgery Fever A slight fever during the first few days after an operation is normal. Any fever that continues or is higher than 38.0 degrees Celsius (100.4 degrees Fahrenheit) should be reported to us. Pain / Discomfort You may have pain after your operation. Acetaminophen (Tylenol™) may be taken every 4 hours as needed. Extra strength or regular is fine. If you develop a fever and have pain when urinating, check with you family doctor since this may mean that you have an infection in your urinary tract. If acetaminophen (Tylenol™) does not reduce the pain, ask your doctor for a prescription for a stronger pain reliever. Fatigue / Appetite You will experience some numbness or tingling in the area of the operative site or incision. This is normal and it may take a few months for this to go away. Leg Swelling or Pain You may have pain and swelling in a vein (phlebitis). This can happen in the calves of your legs after surgery because you have not been able to be active. If you have pain and swelling and /or redness in one or both legs, contact your family doctor or come to the emergency room for treatment if necessary. You may feel tired and may not feel like eating much after your surgery. It is important that you drink 6 to 8 glasses of liquids per day. It may be easier to eat 5 or 6 small meals of healthy foods throughout the day. Good nutrition is important for healing the wound and getting your strength back. You may need rest breaks, naps, or relaxation exercises throughout the day especially after company or exercising. We encourage you to exercise. An example would be taking short daily walks for 10–20 minutes a day. (See activity restriction) We encourage you to be as active as possible to prevent this problem. Nausea and Vomiting Change In Function If you develop any change in arm or leg function, speech ability, or level of alertness, PLEASE CALL US IMMEDIATELY. Motion Sensation Thinking Feelings Speech Hearing Vision Balance Eye & Facial Movements Breathing & Heartbeat It is common to feel weak and a bit nauseated after surgery. You may actually vomit. Gravol, or other similar medications may be used to control vomiting. A prescription is not required to purchase Gravol and your pharmacist can help you choose the dosage that is appropriate for you. Gravol may be taken by mouth or by suppository . Frequent small drinks, Popsicles, and Freezies can help you keep up your body fluid levels when you are nauseated or vomiting. 2 3 Constipation Constipation can sometimes be a problem after surgery. Pain medications that contain codeine can make this problem worse. If possible try to avoid these. Increasing your activity level as much as you are able is important as well as eating foods such as bran, prunes and fresh fruits and vegetables. Activity Restrictions After Brain Tumour Surgery Please do not participate in contact sports, swimming or diving, until your neurosurgeon has examined you at the 6 – 8 week follow-up appointment. Ask your neurosurgeon about driving a motor vehicle or riding a bicycle (with a helmet) after your operation. Human sexuality is an important part of adult lives. Please do not hesitate to ask a member of your health care team about resuming sexual activity after your surgery. Wound (Incision) Care and Monitoring Some swelling and some redness of the wound are normal after this surgery. The swelling will sometimes become worse 4 to 7 days after the surgery, after the bandages have come off. This swelling may be very minor, or reach the size of a fist. This is normal and may take 2 to 3 weeks to improve or get better. As you become more active, the area of swelling may change as fluids move and are reabsorbed. Keeping your head raised may reduce the swelling. Watch your wound for signs of infection such as: the wound becoming redder, streaking or redness on your scalp, oozing of pus from the wound or any leaking of fluid. Fever could be another sign that your wound is infected. If any of these things happen, please call your Neurosurgeon or your Clinical Nurse Specialist immediately. Sutures (stitches) There are three types of sutures that may be used: sutures, self-absorbing sutures and staples. Self-absorbing sutures Self-absorbing sutures, which absorb in 10 to 21 days, do not need to be removed. As the sutures age, they turn darker in color. Please wash your hair daily with a mild shampoo. If the sutures have not fallen out by 14 days after the surgery rub them with a clean cloth or wash them gently and they will fall out over the next few days. Sutures and Staples If this is your first brain tumour surgery, the stitches or staples should be removed approximately 7 to 10 days after your surgery. If it is not your first surgery, the stitches or staples will be removed in approximately 14 days. Your neurosurgeon will inform you when to have your stitches or staples removed. A special instrument is required to remove staples. Your nurse will tell you where you can have your stitches or staples removed. (Brain Tumour Clinic, the CLSC, or by your family doctor). Date: _____________________Where:__________________________________ Cleaning The Wound You may wash your hair gently with mild shampoo and a washcloth starting 4 days after surgery. It is important to keep the scalp clean, so please wash your hair daily. It is important to wash over the wound and to allow water to run over it. The wound heals best if left open to the air. 4 5 Medications Precautions Dexamethasone (Decadron™) You will be given a prescription for dexamethasone (also known as a corticosteroid or Decadron™) when you are discharged from the hospital. Usually this medication is tapered (decreased) over a number of weeks. You may find it helpful to use the Decadron™ Tapering Sheet found in this booklet for help with this decrease. Ranitidine (also known as or other medications ™ ™ (Sulcrate or Cimetidine ) will also be prescribed to prevent the dexamethasone from irritating your stomach lining. When the dexamethasone is stopped, this medication is also stopped. Zantac™) 1) If you should develop severe headaches, nausea/vomiting, seizures, numbness, muscular weakness, paralysis or loss of bowel or bladder control, you may increase your Decadron™ dosage to the last level, at which you did not have trouble and then call 398-5937 to tell the nurse and / or your physician. 2) Never suddenly stop taking steroids without your doctor’s authorization. 3) C ontinue any antacids such as Ranitidine™, Sulcrate™ or Cimetidine™, which were prescribed until you are completely off steroids and then you may discontinue. If you are taking anti-convulsant (anti-seizure) medication, please continue as prescribed. Your medication is: __________________________________________________ A blood test may be requested in order to check your blood level for seizure medication. The following is a list of side effects you may or may not notice, which could result from the decreasing dosage of Decadron™ (steroids). • Decreased energy level • Fatigue • Loss of appetite • Weight loss • Mild headaches (report any headaches which are not controlled with Tylenol™ or similar medications) 6 7 DECADRON™ TAPERING SCHEDULE DECADRON™ TAPERING SCHEDULE (spare) CURRENT DOSAGE SCEDULE: _______ (milligrams) _________ (times per day) CURRENT DOSAGE SCEDULE: _______ (milligrams) _________ (times per day) Date Dosage 8 Morning Noon Evening Night Date Dosage Morning Noon Evening Night 9 Return to Work Most patients take 6 – 8 weeks off. Your return to work may be gradual. You can best decide this in conjunction with your doctor and your employer. Complications Problems rarely occur after being discharged from the hospital; however, it is important to be aware of normal and abnormal signs and symptoms that might occur. It is highly recommended that you carefully read the Brain Tumour Patient Resource Handbook section on complications. If you have not received a copy of this Handbook please ask a member of your heath care team. Please call us if you experience any of the following problems: • D evelop a temperature, higher than 38 degrees Celsius or 100 degrees Fahrenheit • Leakage from the wound • Notice the wound has become red, swollen or hot • Dizziness that doesn’t go away • Headache (with no relief from medication prescribed by your doctor) • Continuous nausea or vomiting • Double vision and /or blurred vision • Drowsiness • Neck stiffness • Increased muscle weakness, difficulty walking, difficulty using your arm or hand • Difficulty keeping your balance • Seizure • Speech problems (slurred speech or unable to say words or make sounds) 10 Follow-up Care A follow-up appointment has been booked for you at the Brain Tumour Clinic or at your neurosurgeon’s office at the Montreal Neurological Hospital in 6 – 8 weeks time. Depending on your diagnosis, you may also have an appointment to be seen by the Radiation Oncology and/or the Medical Oncology Service. Please check in at the Admitting Department if you don’t have a hospital card (green card) when you arrive at the hospital and they will direct you to the clinic in Room 201 (second floor) or to the neurosurgeon’s office (first floor). Your appointment is: ____________________________________ If you did not receive a follow-up appointment with your neurosurgeon prior to leaving hospital, please call our clinic at (514)-398-5937 or your neurosurgeon’s office to arrange an appointment. If you don’t know the neurosurgeon’s office number phone number, please ask the unit co-ordinator prior leaving the hospital. (514)-398 _____________________ Please keep any appointments you have with Radiation Oncology [(514)-934-8040] or Oncology [(514)-934-1934 local 31588]. Please keep any appointments you have arranged with other physicians. Family Doctor It is suggested you return to see your family doctor 2 – 3 weeks after your operation to have him/her check on your progress. 11 Neuro-Patient Resource Centre – room 354 Health Information for Patients and Families: 514-398-5358 You or your family members may have visited the Centre while in hospital. You may find it helpful to visit their website after you go home: http:// www.infoneuro.mcgill.ca The Centre is available to help you find further information concerning your type of brain tumour or further treatments that you may have. Feel free to drop into the Centre before or after your return appointments at the hospital to browse through their literature and books. The Librarian is available to help you in your search. Brain Tumour Support Groups It may be helpful for you to meet with others who share the diagnosis of a brain tumour. It is important for you to know that you are not alone. Monthly brain tumour support group meetings are held on the second Monday of the month at the Montreal Neurological Hospital. Call 514 398-5358 or drop into the Neuro-Patient Resource Centre for further details. If you do not live in the Montreal area please call the Brain Tumour Foundation of Canada to see if there is a brain tumour support group near you. (1800 265-5106) Brain Tumour Foundation of Canada Information from this organization has been provided to you. Along with literature, and support groups, they also have yearly information days in different cities for brain tumour patients and their families. They also have an online chat room where you can meet other brain tumour patients. You may wish to visit their Web site: http: // www.braintumour.ca or call them for further information: (519)- 642-7755 or 1-800-265-5106 12