Empowering People Experiencing Usher Syndrome as Participants in Research

Engaging people from marginalised groups such as the deafblind and Usher communities to participate in research has historically proved challenging, mainly due to communication differences between participants and researcher. Therefore an approach called ‘Multiple Sensory Communication and Interview Methods’ (MSCIM) was developed and used when conducting research with people who are deafblind and have Usher syndrome. This article considers the value of using MSCIM by critiquing the data collection and interview methods used by the author in a qualitative research study with twenty participants aged 18-82 who experience Usher syndrome. Communication and interview methods were participant led with communication methods including: Clear speech, visual frame British Sign Language (BSL), hands on BSL, deafblind manual and written communication. Participants were given the choice to be interviewed face to face, over the telephone, via Skype (video/no video) or email. Whilst this approach was natural in the researcher’s role as a sensory social worker, within the study this approach led to a measure of unexpected equalising between the researched and the researcher and explored how empowering individuals from marginalised groups as active participants in research contributes to inclusivity and promotes trustworthiness in research

Principles of Pituitary Surgery

Key Points 1. Understand the principles of pituitary surgery including the key-elements of surgical planning and decision-making 2. Identify the technical nuances distinguishing the endoscopic from the microscopic transsphenoidal approach 3. Understand the strategies utilized during the nasal, sphenoidal, and sellar stages of surgery that maximize tumor resection while minimizing complications and preserving sino- nasal anatomy/functio

Chevalier Jackson, M.D. (1865-1958): Il ne se repose jamais.

In the final year of the American Civil War, 1865, Chevalier Jackson was born on the 4th of November just outside Pittsburgh, Pennsylvania. The eldest of three sons of a poor, livestock-raising family, Jackson was raised in a period of social and political unrest. He was perhaps an even more unrestful boy. The description of his childhood days from his father’s father—Il ne se repose jamais, ‘‘He never rests’’—would ultimately reflect the man, doctor, and evangelist Jackson would later become.1 Indeed, he never did rest, Jackson would tirelessly pave the way for modern bronchoscopy and endoscopy as a whole; bringing international renown not only to himself, but also to his specialty

Fractionated Stereotactic Radiosurgery Alone for the Treatment of a Papillary Craniopharygioma

The use of radiation treatment (RT) is usually reserved for residual or recurrent craniopharyngiomas, and the role of RT alone and not as an adjunctive therapy to surgery has not been clearly defined. The authors describe a case of a 50-year-old man presenting with a large suprasellar craniopharyngioma with extension into the third ventricle, producing acute hydrocephalus. A ventriculoperitoneal shunt was performed concurrently with an endoscopic biopsy. Treatment with fractionated stereotactic radiosurgery (FSR) resulted in near resolution of the lesion with no evidence of recurrence over six years. A review of RT for the treatment of craniopharyngiomas without surgical resection is performed

Minimally Invasive Surgery for Skull Base Tumors

The Jefferson Center for Minimally Invasive Cranial Base Surgery and Endoscopic Neurosurgery reflects three of the current evolutions in neurological surgery. The first of these is reflected in the name of the Center itself. Surgical Procedures, Minimally Invasive, a Medline Subject Heading since 1998, is defined as: Procedures that avoid use of open invasive surgery in favor of closed or local surgery. These generally involve use of laparoscopic devices and remote-control manipulation of instruments with indirect observation of the surgical field through an endoscope or similar device. With the reduced trauma associated with minimally invasive surgery, long hospital stays may be reduced with increased rates of short stay or day surgery. Traditionally, cranial base tumors have been removed by making craniotomies or cranial base ostomies, and possibly by removing facial bones. To access these areas, surgeons usually need to make potentially disfiguring incisions in the face and scalp. Sometimes the morbidity from the “open” cranial base approach alone could be significant, even with an uneventful removal of the tumor. At the Center, the endoscopic approaches are usually through the nose or nasal passages (Figure 1), however transoral endoscopic approaches to the cranial base and cervical spine are also performed. Because morbidity from the minimally invasive endoscopic approaches is so low, it becomes possible to treat patients with tumors that were previously considered non-resectable or as having too poor a prognosis for more invasive surgery. Even partial resection of such tumors can relieve pain, preserve function, and permit earlier adjuvant radiation and chemotherapy

Usher syndrome: A phenomenological study of adults across the lifespan living in England

Usher syndrome is a rare inherited genetic condition which is one of the main causes of acquired deafblindness in the United Kingdom (UK). Although the condition is not life threatening, it is life altering and will have a significant impact on the lives of not only the person diagnosed with the condition, but also their families, friendship groups and new and existing relationships. The aim of the study was to develop an understanding of the experiences of diagnosis of and living with Usher syndrome, from the perspective of adults living in England. Specific objectives of the study were to explore the experience of being diagnosed with Usher syndrome; explore the transition from adolescence to adulthood for people who have Usher syndrome; to develop an understanding of the experience of living with Usher syndrome, including support, developmental opportunities and the role of the Deaf community; to disseminate original findings; inform future practice, service development, policy and education and make recommendations for further research relating to the experience of living with Usher syndrome. To address these aims and objectives, this qualitative, descriptive phenomenological study, conducted interviews with 20 males and females aged between 18-82 years from a variety of demographic locations. To contribute to the trustworthiness of the study, I developed a methodological innovation called ‘Multiple Sensory Communication and Interview Methods’ (MSCIM) which ensured that as far as possible communication and interview methods were participant led. Three overarching messages from findings were revealed: the importance of ensuring communication is timely, supportive and appropriate; Usher support at the right time: providing physical and virtual support networks and essentiality of Usher awareness: raising the profile. This study is unique because it is the first qualitative, descriptive phenomenological study to demonstrate new knowledge to better understand and support people living with Usher in England. Keywords Usher syndrome, sensory impairment, D/deafblindness, ‘Multiple Sensory Communication and Interview Methods’ (MSCIM), social work, qualitative research, descriptive phenomenolog

Fully Endoscopic Microvascular Decompression for Trigeminal Neuralgia

Trigeminal neuralgia (TN) is a chronic, progressive facial pain disorder characterized by severe paroxysmal episodes in the distribution of the trigeminal nerve. The most common cause of (TN) is compression of the trigeminal nerve by a vascular structure within the posterior fossa at the dorsal root entry zone (DREZ). Initially described by Dr. Peter Janetta, microvascular decompression has been clearly demonstrated to be a safe and effective treatment for TN with excellent immediate and long-term pain relief.1 Although neuroimaging has advanced significantly allowing for improved pre-operative visualization of the trigeminal nerve and determination of vascular conflict, most neurosurgeons continue to practice the MVD procedure in a very similar manner to Dr. Janetta’s 1967 description.2 While the retrosigmoid craniotomy and operative microscope allows for an excellent view of the posterior aspect of the trigeminal nerve within the cerebellopontine angle, visualization of the anterior aspect of the nerve is limited. Additionally, adequate visualization of the DREZ may be difficult and require additional retraction of the cerebellum, potentially resulting in complications such as hearing loss and cerebellar injury. As neurosurgical experience with the endoscope has grown, a variety of authors have described performing microvascular decompression with endoscopic assistance which involves using the endoscope to inspect the trigeminal nerve for sites of compression but performing the decompression under the microscope. While the main advantage of the endoscopic approach compared to the microscopic approach is improved visualization of the trigeminal nerve from the DREZ to Meckel’s cave including its inferior, anterior and superior surfaces, evolution of the procedure to a fully endoscopic approach has the additional benefits of being less invasive with minimal soft tissue dissection and cerebellar retraction allowing for reduced patient discomfort and accelerated recovery. In this technical review, we describe our approach to performing a fully endoscopic microvascular decompression including the surgical nuances that allow the procedure to be performed safely and efficiently. Pages 2-

Goals of Care 101

Hospice and Palliative Medicine - Alexandra Evans, DO Approaching Goals of Care in the Outpatient World - Elham Siddiqui, MD Inpatient Goals of Care Discussion - Adam Pennarola, M

NEUCOMP2 - parallel neural network compiler

A parallel neural network compiler (NEUCOMP2) for a shared-memory parallel machine has been implemented by introducing parallelism in NEUCOMP. The parallel routine detects the program loops of the sequential version generated by NEUCOMP, undergoing analysis of the data dependences and transforms it into a parallel version. Experiments were carried out to study the performance of the NEUCOMP2 programs for the backpropagation network. NEUCOMP2 was developed and run on the Sequent Balance 8000 computer system at Parallel Algorithm Research Centre, U.K

Parallel simulation of character recognition problems using NEUCOMP2

NEUCOMP2 is a parallel Neural Network Compiler for a shared-memory parallel machine. It compiles a program written as a list of mathematical specifications of Neural Network (NN) models and then translates it into a chosen target program which contains parallel codes. Performance results for character recognition problems on popular NN models are presented. The models are the backpropagation, Kohonen, Counterpropagation and ART1 network models. NEUCOMP2 was developed and run on the SEQUENT Balance 8000 computer system at PARC