BRAIN ANEURYSMS RECOVERY GUIDE MEDICAL ADVISORY Medical Advisory Board of Directors BOARD Bernard R. Bendok, MD | Mayo Clinic Gavin W. Britz, MD, MPH | Houston Methodist Hospital Stanley J. Berman, PhD | William James College Executive Director and Founder Aaron A. Cohen-Gadol, MD, MSc | Methodist Hospital Christopher S. Ogilvy, MD Beth Israel Deaconess Medical Center E. Sander Connolly Jr, MD | Columbia University Medical Center and New York-Presbyterian Hospital President Aaron S. Dumont, MD | Tulane University School of Medicine Robert H. Rosenwasser, MD Thomas Jefferson University Hospital Robert M. Friedlander, MD | University of Pittsburgh Medical Center Steven L. Giannotta, MD | Keck Medicine of USC Vice President L. Fernando Gonzalez, MD | Duke University Medical Center Robert D. Brown, MD, MPH Mayo Clinic David M. Greer, MD | Yale University Schoool of Medicine Murat Günel, MD | Yale University School of Medicine Brian L. Hoh, MD | University of Florida Northeast Regional Directors David J. Chalif, MD Brian T. Jankowitz, MD | UPMC Presbyterian North Shore University Hospital Sucheta A. Kamath, MA | Cerebral Matters Carlos David, MD Robert Kooken, PhD | Neuropsychological Services Lahey Hospital and Medical Center Michael Lawton, MD | University of California San Francisco Southeast Regional Directors Stephen Lewis, MD | Perth, Australia Daniel Barrow, MD The Emory Clinic R. Loch Macdonald, MD, PhD | St. Michael’s Hospital Jacques J. Morcos, MD Neil A. Martin, MD | Geffen School of Medicine at UCLA University of Miami Health System Thomas Masaryk, MD | The Cleveland Clinic Midwest Regional Directors Eric Nussbaum, MD | Saint Joseph’s Hospital Sepideh Amin-Hanjani, MD Aman Patel, MD | Massachusetts General Hospital University of Illinois at Chicago Christopher Putman, MD | Inova Fairfax Hospital Paul J. Camarata, MD University of Kansas Medical Center Andrew J. Ringer, MD | Mayfield Clinic for Brain & Spine Joshua Seinfeld, MD | University of Colorado Hospital West Regional Director Avi Setton, MD | North Shore University Hospital David Newell, MD The Seattle Neuroscience Institute Adnan H. Siddiqui, MD, PhD | University at Buffalo Neurosurgery Robert J. Singer, MD | Dartmouth-Hitchcock Medical Center Brain Aneurysm Foundation Edward R. Smith, MD | Boston Children’s Hospital Executive Director Gary K. Steinberg, MD, PhD | Stanford University School of Medicine Christine Buckley Rafael Jesus Tamargo, MD | The Johns Hopkins Hospital Chairman of the Board Ajith Thomas, MD | Beth Israel Deaconess Medical Center John C. Rogers John A. Wilson, MD | Wake Forest Baptist Health Gregory J. Zipfel, MD | Washington University Mario Zuccarello, MD | University of Cincinnati 1 CONTENTS After Your Treatment 5 Potential Deficits 7 Physical Changes 9 Attention and Executive Function 12 Memory 13 Social-Emotional Changes 15 Returning to Work/School 17 Aids to Recovery 18 A Note to Caregivers 21 2 OUR MISSION Provide information about and raise awareness of the symptoms and risk factors of brain aneurysms to prevent ruptures and subsequent death and disability. Work with medical communities to provide support networks for patients and families. Advance research to improve patients’ outcomes and save lives. 1 3 Undergoing treatment for a brain aneurysm is a major life event that continues long after discharge from the hospital. Survivors face the potential for physical, emotional, and cognitive changes that can be minor or significant, short-term or long-lasting. Recovery for patients who suffered a ruptured aneurysm tends to be longer and more difficult than it is for patients whose aneurysm did not rupture. Older people and those with chronic medical problems may also recover more slowly than younger, healthier individuals. Some patients may require rehabilitation. Others are able to care for themselves after a short period of recovery. As these examples demonstrate, each individual and situation is unique and recovery times will vary. One of the most frequently asked questions by brain aneurysm survivors is, “How long until I get better?” Unfortunately, there is no way to predict how long it will take to improve, or even how much improvement will occur. There will be a better chance for recovery if the survivor and the family maintain hope, even when facing a long recovery process. Rehabilitation pioneer George Prigatano, PhD, points out, “If the brain is alive, it can learn.” Remind yourself often of this: the brain can learn new skills for a lifetime. Patients recovering from aneurysm treatment experience many changes and challenges. We prepared this booklet to provide you and your caregivers with information about many of the most common changes, with suggestions for how to deal with them. You will also find additional information on many of the topics in this booklet on our website: bafound.org. 4 AFTER YOUR TREATMENT You can expect some changes in the first few days and weeks following your treatment. Which of these you experience and how long they last depends on a number of factors, including whether your aneurysm had ruptured prior to treatment and the type of treatment (open or endovascular) you had. OPEN SURGERY Issues after open surgery (clipping) may include: Incision Pain/Numbness The pain usually occurs at the incision site. It may take several weeks for the incision to heal. After this time, you may experience brief episodes of sharp pain in the incision area as the nerves grow back. This is not cause for concern. The pain will go away with time. The incision area can also feel numb; this may or may not get better with time. It may be uncomfortable to sleep on the side with the incision, but it is safe to do so. Hearing Loss You may notice muffled hearing in the ear on the same side as the incision. This is due to fluid accumulation and will get better with time. However, it may take several weeks to notice improvement. Jaw Pain Jaw pain may occur when you open your mouth to eat or brush your teeth. This is due to manipulation of the muscles during surgery. The pain will improve over time. You may be able to speed up your recovery by opening and closing your mouth (about 10 times) at least four to five times a day, gradually increasing how wide you open it. Let your surgeon know if the pain persists after six weeks; in this case, physical therapy may be advised. 5 Clicking Noise in Head This commonly occurs when you position your head in different ways. While alarming, there is no need to be concerned. This is the bone healing and a normal part of the recovery process. The clicking goes away after several weeks. Seizures Seizures may occur at the time of aneurysm rupture or sometimes as a result of surgery on certain parts of the brain. Your neurosurgeon may put you on an anti-seizure medication in the hospital. In certain cases your doctor will have you continue this medicine after you go home. If there are no further seizures, the medicine is usually continued for only a short time. If you are on anti-seizure medicine, it is important that you take the medicine as prescribed. ENDOVASCULAR TREATMENT Issues after endovascular treatment (also called embolization) may include: Groin Pain There may be bruising and discomfort where the catheter was inserted in the groin. You should avoid strenuous activity and hot baths for one week after treatment. A hematoma (hard large blood clot) can develop at the site. Should this happen, or if there is increased pain or swelling in the area, contact the doctor who performed the procedure. Hair Loss Radiation or the contrast dye used during the procedure can occasionally result in hair loss. This usually only affects a small area and is temporary — the hair will grow back. Keep in mind that stress and medicines can also cause temporary hair loss. 6 POTENTIAL DEFICITS Survivors of brain aneurysms may experience short- and/or long-term physical and/or neurological deficits as a result of a rupture or treatment. For survivors of a ruptured aneurysm, the deficits are often greater, more noticeable, and require a longer recovery period. Many of these deficits improve with time, but physical, occupational, and speech therapy can be very helpful and should be considered even when deficits are minor. Therapy can provide specific strategies and discussions with a therapist can help with general coping. Persistent difficulties with focus, memory, or cognition (such as: language processing, organizational skills, concentration, decision making, and higher-level thinking skills) can be a challenge. Survivors should seek out assessment from a neuropsychologist or a speech-language pathologist to determine their level of cognitive functioning, life skills, and related issues during activities of everyday life. Sometimes, family members who see you daily will be the first to notice any subtle changes or slight deficits that may not be obvious to you or others. Often, some deficits become apparent only after you return to a more demanding lifestyle. You should talk to your therapist or doctor about how to deal with these challenges. 7 Some — but not all — survivors may experience the following: • Physical and mental fatigue • Chronic headache or head pain (mainly ruptured aneurysms) • Concentration headaches • Vision deficits: partial or complete blindness, or peripheral vision deficits • C ognitive problems (such as short-term memory difficulties, decreased concentration, perception problems) • Articulation and speech-delivery problems • Behavioral changes • Loss of balance and coordination • Arm or leg weakness 8 PHYSICAL CHANGES Fatigue Fatigue is the most common problem in the recovery process. You may feel tired all the time and have no energy or “get up and go.” Normal everyday activities, even simple ones such as taking a shower, may wear you out. You may take more naps, only to find that you have trouble sleeping at night. This is normal. Keep in mind your body has been through a lot and needs rest before it can function well again. As time goes on, gradually increase your activities and the amount of time you spend doing them. It can take months before your activity level returns to where it was before your treatment. Try not to get discouraged, and take it one day at a time. If you frequently have trouble sleeping, talk with your healthcare provider. Sometimes the short-term use of a sleeping medication may be helpful. Also, have your family limit your visitors. Visitors mean well but can wear you out. If they want to help, suggest they prepare a meal or do shopping for you. 9