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THERAPEUTIC AND EMOTIONAL RECOVERY AFTER A SUB-ARACHNOID HEMORRHAGE: PATIENT AND CAREGIVER PERSPECTIVES AND STRATEGIES.* Roanne G. Brice, Ph.D., CCC-SLP University of Central Florida, USA [email protected] Alejandro E. Brice, Ph.D., CCC-SLP University of South Florida, USA [email protected] * The authors report no declaration of interest. The authors have no financial interest, direct or indirect, in the subject matter or materials discussed in the manuscript. • This presentation focuses on what patients, caregivers, and family members may experience when a neurological trauma occurs. • It is the personal account and perspectives when a patient suffered a vertebral artery aneurysm and sub-arachnoid hemorrhage (SAH). • The vertebral artery supplies blood to the unpaired basilar artery (near the circle of Willis) and major areas of the brain (Bear, Connors, & Paradiso, 2007). • The rupture of the fusiform (i.e., spindle shaped) aneurysm on the vertebral artery caused a subarachnoid hemorrhage (SAH) wherein blood was dispersed throughout the cerebrospinal fluid that surrounds the brain and spinal cord. VERTEBRAL ARTERY BACKGROUND and INITIAL TRAUMA • Patient was a healthy 52 year-old male at the time of the SAH who presented no health or neurological issues that are typically associated with a vertebral artery lesion [e.g., motor or sensory symptoms, dysarthria, imbalance, dizziness, tinnitus, paresthesia (tickling or prickling of the skin), homonymous hemianopsia (partial blindness), diplopia (double vision), cranial nerve palsies, or dysphagia) (Harrigan & Deveikis, 2009). • However, he exhibited only one symptom associated with a subarachnoid hemorrhage, i.e., continued fluctuating levels of nausea (Josephson, 2010). The nausea was thought to be related to gall bladder dysfunction. While in the hospital awaiting the gall bladder surgery, the patient was discovered on the floor in his hospital room, barely breathing and in tachycardia. • Patient was rushed to the intensive care unit (ICU) and stabilized. A CT of the head indicated that he had a suffered a subarachnoid hemorrhage bleeding into the cerebrospinal fluid (CSF). Two MRI studies were required do diagnose the exact location of the SAH due to neurological vasospasms. • The vertebral artery had a fusiform aneurysm that was approximately 8 millimeters (mm) in length with significant narrowing of the artery directly below the aneurysm. • The artery ruptured causing blood to enter into the subarachnoid space. Due to the rupture occurring in CSF rather than the brain, The patient did not present with significant deficits in cognitive functioning, speech, language, or motor abilities [as reported by the neurosurgeon, primary care physician, and spouse (a certified and state licensed SLP)]. FIGURE 1. MRI OF RIGHT VERTEBRAL ARTERY SUB-ARACHNOID HEMORRHAGE RECOVERY Day 2 post trauma • The fusiform dissecting aneurysm was repaired by a Neuroradiologist. Two stents (i.e., 20 and 22 mm in length), one inside of the other, were inserted in the vertebral artery via an incision in the upper leg/groin area. • The dual stents provided additional reinforcement and support to the artery and aneurysm. In addition to the aneurysm, a 10 mm length of the artery below the rupture was extremely narrow, possibly due to a birth defect. To repair the aneurysm, a coil was inserted into the bulged and ruptured area of the artery. DAY 2 POST TRAUMA CONT. • The patient was also on IV antibiotics prescribed for the inflammation of the meninges and to avoid potential infections. Due to the severe pain and nausea, the patient was medicated the majority of the time for the first two weeks in ICU. • The patient’s sodium and potassium levels in the blood were extremely low for two weeks and initially required monitoring every six hours. The decreased sodium is a physiological response to the neurological trauma and blood in the cerebrospinal fluid (Dooling & Winkelman, 2004; Josephson, 2010). Day 11 post trauma • The patient was continually monitored for vasospasms which can cause a stroke after a SAH. On day 11, the patient became agitated and was hallucinating, and hearing voices. It was unsure if the cause was vasospasms or ICU psychosis. • Intensive care unit (ICU) psychosis is experienced by 1 out of 3 patients in the ICU for extended periods of time. Due to sleep deprivation, constant stimulation of lights, noises, checking vital signs (i.e., blood pressure, temperature, pulse, respiratory rate, pain scale, and cognitive orientation), stress on the body, medications, salt wasting (i.e., hyponatremia) often bring about ICU psychosis. Differential Diagnosis: • To determine if the behaviors were ICU psychosis or due to vasospasms, the neurosurgeon conducted an angiogram. The angiogram indicated moderate vasospasms which continued to occur; however, after sedated sleep the behaviors and symptoms disappeared. Thus, the symptoms appeared to be related to ICU psychosis. Day 14-18 post trauma. • The patient was moved to a neuro-ICU (progressive unit), a step down from the more critical care ICU. • Sixteen days after the SAH, the patient started physical therapy by walking in the hallway a few feet and was able to go to the restroom with assistance. • While in the hospital, the neurosurgeon had completed a follow-up angiogram to examine his cerebral arteries and the stents and coil about 10 days after they were inserted. The repaired artery was healing and the aneurysm had slightly reduced in size. Day 22 post trauma • The patient was released from the hospital. • He experienced some minor anomias (or word finding difficulties, particularly of famous individuals or low incidence names). He did not have any difficulties with names of family, friends, or colleagues. • Word retrieval abilities were estimated to be at 95% two months post-trauma. As with spontaneous recovery of individuals with aphasia (Brookshire, 2007); it is estimated that his full mental abilities would return within six months posttrauma (as indicated by the neurosurgeon on a two month follow-up visit). PATIENT PERSPECTIVE • Transitions after a significant health issue can be stressful. Leaving the hospital induced fear and anxiety. My thought…what if the aneurysm ruptured again? • While, in the hospital the patient was continuously asked orientation questions such as my name, birth-date, and location. “I was able to perform this task within days of my trauma. Over time I began to recognize my decreased ability to remember and recall (short term memory).” Therefore, simple tasks may hide higher order and executive function cognitive disabilities. • Working memory, particularly word retrieval, and immediate memory have been the cognitive and language features that have been most impacted from the trauma. Focusing his attention has also been an issue. CAREGIVER / SPOUSE PERSPECTIVE • A call in the middle of the night…Your husband “has taken a turn for the worse” and the doctors had “brought him back”… “come to the hospital immediately!” • Immediate shock of learning the details and severity of my husband’s SAH, I realized the importance of my role of being his patient advocate, medical researcher, and emotional support during this crisis. • Research all aspects of the medical condition to become knowledgeable so that you can assist in making appropriate medical decisions. Research-based, rather than emotionally-based decisions, are crucial decisions for maximum recovery. Speech-language pathologists should target the following goals for the patient and family to facilitate an increased quality of life (Hidecker, Jones, Imig, & Villarruel, 2009): Reduce the family burden issues; (2) Reduce the patient dependence levels; (3) Improve the patient’s ability to cope to everyday and new situations; (4) Address cognitive-language impairments (e.g., concentration, memory); (5) Address mood disturbances; emotional issues (e.g., anger, irritability); (6) Address fatigue, tiredness issues (directly or indirectly); (7) Address the patient’s passivity issues (note that in AB’s situation this resulted from a feeling of being overwhelmed). Suggestions from personal experience: Research all aspects of the medical condition to become knowledgeable so that you can assist in making appropriate medical decisions. Researchbased, rather than emotionally-based decisions, are crucial decisions for maximum recovery. Designate 1-2 individuals who are close to the patient to continually stay at the hospital, preferably in the patient’s room. Physicians and nurses continually rotate, therefore, having a constant person monitor progress or decline in condition is essential. Research all medications prescribed and monitor the patient’s symptoms. Being aware of medication side effects and the patient’s symptoms can provide important ongoing information to medical personnel for appropriate medication decisions. Use technology to support the caregiver/patient’s needs. Computers, tablets, cell phones, etc. are essential to managing medical, family, and work related communication during the crisis and recovery stages. Designate someone to assist. Build a family and friends’ support system and accept assistance. Remind families to work with their employers to seek advice regarding medical benefits that could be available to them in a time of medical crisis. Use of a patient progress reporting website is essential to continually update the patient’s status. The convenience of being able to enter information real time into a web-based blog allows all family and friends to monitor their loved ones progress. It also provides a way to communicate well-wishes to the patient and immediate family. An example is CaringBridge, a non-profit organization, located at http://www.caringbridge.org. Above all, the caregiver(s) must be aware of their physical and emotional needs and limits. Take particular care to maintain personal nourishment and needed rest. Family focused intervention for SLPs in working families of disabled individuals should include (adapted from Ciccia & Threats, 2015): (a) family education on the disability and rehabilitation; (b) changing expectations and supporting successes rather than failures; (c) fostering environments that promote daily participation and interactions; (d) supporting and encouraging family members to advocate for the individual with the disability. When SLPs implement these strategies, patients, families, and caregivers can experience better home integration, less caregiver stress, and greater patient social integration when the caregiver receives sufficient support (Sady et al., 2010; Sander et al., 2012; Schure , et al., 2006; Sit, Wong, Clinton, & Fong, 2004; Visser-Meily, van Heugsten, Schepers, & Lindeman, 2005). The cognitive, language, memory, daily life rehabilitation needs must be addressed. SLPs are well versed in targeting perception, processing, memory, and attention needs. Additional areas: word naming tasks word memory tasks, auditory attention, divided attention, working memory, and cognitive speed utilizing reading and writing tasks. The patient's emotional needs also must be considered. Panic attacks, the inability to sleep, and emotional episodes may occur. Other adjustments will be needed as the patient adapts to a new way of functioning post-trauma (Forster et al., 2014). For example, Forster et al., (2014) identified four possible post-stroke patient outcomes: (a) disruption, adjustment, and acceptance; (b) cycles of disruption, adjustment, and acceptance; (c) disruption without adjustment and acceptance; (d) continuing on-going decline. The patient may need continued therapy and/or counseling. Suggestions for caregivers is often an overlooked aspect of speech and language therapy. Caregivers are instrumental in the patient's recovery. Hence, it is vital to reduce family stress after a cerebral trauma: reducing family burden, reducing patient dependence, enabling the patient to cope with everyday situations, decreasing patient mood disturbances, decreasing patient fatigue, and also decreasing patient passivity. In support of family members, SLPs must also encourage the family to always advocate, but, most importantly to seek support. Support in therapy sessions and/or support groups are recommended. The role of families, being culture specific, needs to be further examined and considered. In summary, speech-language pathologists should recognize that caregiver and family support is vital to our client's outcomes. • Research all medications prescribed and monitor the patient’s symptoms. Being aware of medication side effects and the patient’s symptoms can provide important ongoing information to medical personnel for appropriate medication decisions. • Use technology to support the caregiver/patient’s needs. Computers, iPads, cell phones, etc. are essential to managing medical, family, and work related communication during the crisis and recovery stages. Designate someone to assist. • Build a family and friends support system and accept assistance offered. SIX-MONTH FOLLOW-UP MAGNETIC RESONANCE ANGIOGRAM (MRA) • A six month follow-up magnetic resonance angiogram indicated normal blood flow, healing, stabilization of the aneurysm, and normal diameter of the right vertebral artery. Monitoring using MRAs on six-month intervals were conducted for the first two years and subsequently every year after the 3rd year. See Figure 2. FIGURE 2. SIX MONTH FOLLOW-UP MRA DEFICITS Patient presented deficits similar to traumatic brain injury affecting memory (declarative memory), attention, and focus issues. Declarative memory- , explicit memory, which allows for factual recall. Declarative memory can be further subdivided into episodic and semantic memory. Episodic memory is described as the recollection of autobiographical information with a temporal and/or spatial context, whereas semantic memory involves recall of factual information with no such association (language, history, geography, etc.). Semantic memory- meanings, understandings, concepts; Medial temporal lobes and hippocampus, left inferior prefrontal cortex (PFC) and the left posterior temporal areas are other areas involved in semantic memory use. Issues mostly resolved 3 years post-trauma. Near full recovery 5 years later. REFERENCES Abutalebi, J., Cappa, S., & Perani, D. (2001). The bilingual brain as revealed by functional neuroimaging. Bilingualism: Language and Cognition, 4, 179-190. Bayles, K., Tomoeda, C., & Trosset, M. (1992). Relation of linguistic communication abilities of Alzheimer’s patients to stage of disease. Brain and Language, 42, 454– 472. Bear, M., Connors, B., & Paradiso, M. (2007). (3rd ed.). Neuroscience. Exploring the brain. 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