pertaining to hearing
ACOUSTIC NEUROMA (AN)
benign tumor of the eighth cranial nerve
ACOUSTIC NEUROMA ASSOCIATION OF CANADA (ANAC)
a registered non-profit organization in Canada with similar purposes to ANA
a chart of hearing acuity recorded during hearing tests
a medical professional who assesses and manages hearing and balance-related disorders
a medical professional specializing in the diagnosis and treatment of hearing, balance and communication problems, including tinnitus
AUDITORY BRAINSTEM IMPLANT (ABI)
a type of hearing device that bypasses the cochlea in the middle ear and the auditory nerve and is implanted in the brainstem
not malignant, non-cancerous: does not invade surrounding tissue or spread to other parts of the body
pertaining to both sides of the body
BONE ANCHORED HEARING AID
a hearing device that works through bone conduction with a sound processor attached to a small titanium implant
The sound processor is placed on the deaf side, behind the ear and sound is transferred through the bone of the skull, stimulating the cochlea in the hearing ear. The brain is then able to distinguish between the sounds that it receives from the deaf side, via this system, from the sound that it receives directly from the hearing ear. This ultimately results in the sensation of hearing from the deaf side.
connects the upper brain to the spinal cord; is less than three inches long
BRITISH ACOUSTIC NEUROMA ASSOCIATION (BANA)
a registered charity organization in the United Kingdom that is dedicated to promoting the exchange of mutual support and information among individuals affected by acoustic neuromas, with similiar purposes to ANA
.394 inch (2.54 cm equals one inch) - ten millimeters equal one centimeter
space bounded by the petrous bone, brainstem, and cerebellum, and through which cranial nerves 6-11 pass
located behind the brainstem, extending from the brainstem out toward each mastoid bone; carries 11% of the brain's weight and controls muscular coordination
COCHLEAR IMPLANT (CI)
CI is a small, electronic device that is implanted within the inner ear to increase hearing capabilities. Cochlear implants may be helpful when the patient has significant hearing loss in both ears. The cochlear nerve and blood supply must be intact on the CI side - often not the case for post-treatment AN patients. CIs compensate for damaged or non-working parts of the inner ear, finds useful sounds and sends them to the brain.
control the sensory and muscle functions around the eyes, face and throat- There are two sets each of twelve cranial nerves, one set for each side of the body.
CROS HEARING AID
Contralateral Routing of Sound - used with one-sided deafness. It receives sound on the deaf side, amplifies it, and carries it to the good ear.
CEREBROSPINAL FLUID (CSF)
a watery fluid, continuously being produced and absorbed, which flows in the ventricles (cavities) within the brain and around the surface of the brain and spinal cord
COMPUTERIZED TOMOGRAPHY (CT SCAN)
X-ray test which creates a cross-sectional picture of any part of the body - can distinguish among tissue, fluid, fat and bone
a robotic radiosurgery system that delivers multiple beams of radiation, used to treat benign tumors and cancers and other medical conditions located anywhere in the body in multiple sessions
EAR, NOSE AND THROAT (ENT) PHYSICIAN
also called an otolaryngologist, a physician specializing in the diagnosis and treatment of diseases of the head and neck, especially those involving the ears, nose and throat
a recording of the eye movements, usually done to confirm the presence of involuntary eye movements; can also be done in cases of vertigo to determine if there is damage to the vestibular portion of the acoustic nerve or in cases of possible acoustic neuroma
FRACTIONATED STEREOTACTIC RADIATION (FSR)
any focused radiation treatment that requires more than one treatment delivery session
a contrast material given at the time of MRI which concentrates in the tumor and makes it more visible
GAMMA KNIFE (GK)
a radiosurgical machine that contains 201 separate radioactive cobalt sources; gamma rays from each source are focused together at the tumor
INTENSITY MODULATED RADIATION THERAPY (IMRT)
an advanced mode of high-precision radiotherapy that utilizes computer-controlled linear accelerators to deliver precise radiation doses to a tumor or specific areas within the tumor
INTERNAL AUDITORY CANAL (IAC)
a short auditory canal in the petrous portion of the temporal bone, part of the base of the skull that extends from the ear towards the center of the head, through which pass the vestibulocochlear and facial neves
a radiosurgical machine that produces x-rays electronically
MAGNETIC RESONANCE IMAGING (MRI)
a technique that uses a magnetic field and radio waves to create detailed images of the organs and tissues within the body
surgical approach to an acoustic neuroma primarily used for the purpose of hearing preservation
a metric unit of measure; 10mm=1cm
a familial condition characterized by developmental changes in the nervous system, muscles, bones, and skin - the central form (Neurofibromatosis 2 - NF2) may produce bilateral acoustic neuromas
benign growth originating on a nerve
a physician specializing in the neurological aspects of the auditory and vestibular apparatus
a physician with a surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord and peripheral and sympathetic nervous system
a physician specializing in the diagnosis and treatment (including surgery) of head and neck disorders, especially those involving the ear, nose and throat (ENT)
a physician specializing in the diagnosis and treatment of ear disorder only.
located at the base of the brain in front of the cerebellum, this section of the cranium is a mass of nerve tissue which coordinates the activities of the various lobes of the brain
the cavity in the back part of the skull which contains the cerebellum, brainstem and cranial nerves 5-12
a therapy using protons, a positively charged particle, to treat AN
RADIOSURGERY (STEREOTACTIC RADIOSURGERY - SRS)
a treatment consisting of a single session of radiation treatment
a treatment consisting of multiple sessions of radiation treatment
a surgical approach for AN where an opening in the cranium behind the mastoid, close to the back of the head is used for access
SENSORINEURAL HEARING LOSS (SNHL)
deafness caused by failure of the acoustic nerve
SUDDEN SENSORINEURAL HEARING LOSS (SSHL)
a rapid loss of hearing that requires medical attention
a tube implanted in the cranium to balance the flow of cerebrospinal fluid and used in the treatment of hydrocephalus
a common symptom of AN patients, a noise produced in the inner ear, such as ringing, buzzing, roaring, clicking, etc.
a surgical approach for AN where the mastoid bone and the bone in the inner ear (labyrinthine) are removed to access the tumor; this approach results in complete hearing loss on the tumor side
involving only one side
a sensation of dizziness and loss of balance, associated particularly with looking down from a great height, or caused by disease affecting the inner ear or the vestibular nerve
associated with the balance system
Each heading slides to reveal more information.
Early symptoms can be mistaken for other medical issues, may be ignored, or overlooked, thus making diagnosis a challenge. In the 2014 ANA Patient Survey, almost 88% of participants indicated they had single-sided hearing loss at the time of diagnosis. Hearing loss with acoustic neuroma is usually subtle and more pronounced in higher frequencies, although sudden hearing loss can occur. Sometimes the patient or doctor attributes hearing loss to aging, noise exposure, or allergies.
Approximately 70% of patients reported tinnitus (ringing or noise in the ear) at the time of diagnosis, 57% reported vertigo/dizziness or balance issues. Other presenting symptoms can include a feeling of fullness/plugging in the ear, headache, facial weakness/paralysis, fatigue, eye problems, cognitive changes, and oral/swallowing issues.
Since the balance portion of the eighth nerve is where the tumor arises, unsteadiness, vertigo, dizziness, or what many describe as ‘wonky-headedness’ may occur during the growth of the tumor. Acoustic neuroma patients often experience balance issues before diagnosis. The remainder of the balance system sometimes compensates for this loss, and, in some cases, no imbalance will be noticed.
Larger tumors can press on the trigeminal nerve, causing facial or tongue numbness and tingling, constantly or intermittently. Tumor-related increase of intracranial pressure may cause headaches, clumsy gait and mental confusion. This can be a life-threatening complication requiring urgent treatment. Even though the facial nerve (the nerve that moves the face) may be compressed by the tumor, it is unusual for patients to experience weakness or paralysis of the face from acoustic neuroma, although this may occasionally occur, either short or long term.
Typical Symptoms Recap
Unilateral Hearing Loss (on one side only) - This can sometimes occur suddenly (sudden hearing loss), but it generally can be very gradual, over months or years. In most acoustic neuroma patients, the loss is more pronounced in the higher frequencies. Unilateral hearing loss is usually the first symptom that leads to discovery of this benign brain tumor.
Tinnitus (ringing or buzzing in the ears) - Most AN patients do have tinnitus both before and after treatment. Not all patients with tinnitus have a brain tumor.
Feeling of fullness in the ears - Acoustic neuroma patients sometimes complain of a feeling that their ear is plugged or "full.”
Balance problems, vertigo - Acoustic neuroma patients often experience balance issues before diagnosis. It can occur very gradually and may go unnoticed as the body has many compensating mechanisms.
Headaches - Acoustic neuroma patients sometimes recall, after diagnosis, that they had unexplained headaches.
Facial pain, numbness, paralysis - Acoustic neuromas are usually discovered before they cause facial symptoms. However, if they are large or impacting one of the facial nerves, they can cause numbness, tingling or even facial paralysis.
Online discussion group, videos, articles, free online tools including care cost calculator.
American Brain Tumor Association
Care and Support Link/Caregiver Resources
Living and Coping e-newsletter, online support, links to additional resources including organizations that provide financial assistance and transportation assistance. Orientation to Caregiving, download the pdf handbook for family caregivers.
Caregiver Action Network
Provides education, peer support and resources for family caregivers. Family caregiving toolbox provides a great selection of links and resources to helpful organizations. A peer network provides access to volunteers across the U.S. who are current and former caregivers and can help provide information and support.
Provides free websites to connect people experiencing a significant health challenge to family and friends. Websites are easy to create and use. Authors add health updates and photos to share their story while friends and visitors can leave messages in the guestbook.
Family Caregiver Alliance
Caregiver discussion group, tips, FAQs, fact sheets, resource listing by state, information available in other languages, detailed listing of practical tools and resources for caregivers.
Lotsa Helping Hands
Provides free tools, resources, online community, webinars, monthly newsletter and a resource directory.
National Organization for Empowering Caregivers
Newsletters, articles, Q&A column, resource directory.
National Brain Tumor Society
Resources and Support Link
Caregiver training, support groups, workshops, interactive online community, Link Library, tip sheets, how-to-guides.
Today´s Caregiver magazine, local resources, e-newsletter, discussion forum, Caretips, Fearless Caregiver conferences.
Respite weekends, support groups, online forum, quarterly newsletter, e-newsletter, resource directory.
The Acoustic Neuroma Association® does not endorse any of the organizations listed above or any commercial product, physician, surgeon, medical procedure, medical institution or its staff.
The diagnosis of an acoustic neuroma is often triggered by a patient’s symptoms. The most common presenting feature of acoustic neuromas, occurring in 90% of patients, is unilateral hearing loss. When "pure tone audiometry" is used, the most common finding is high frequency hearing loss. The hearing loss is progressive in most patients, but in approximately 12% of patients the hearing loss may occur suddenly. Other symptoms of the acoustic neuroma include asymmetric tinnitus (ringing in the ear), dizziness and disequilibrium (difficulty with balance). Because symptoms of these tumors resemble other middle and inner ear conditions, they may be difficult to diagnose. Preliminary diagnostic procedures include ear examination and hearing test. Computerized tomography (CT) and magnetic resonance imaging (MRI) scans help to determine the location and size of the tumor. Early diagnosis offers the best opportunity for successful treatment.
- Hearing test (audiometry): A test of hearing function, which measures how well the patient hears sounds and speech, is usually the first test performed to diagnose acoustic neuroma. The patient listens to sounds and speech while wearing earphones attached to a machine that records responses and measures hearing function. The audiogram may show increased "pure tone average" (PTA), increased "speech reception threshold" (SRT) and decreased "speech discrimination" (SD).
- Brainstem auditory evoked response (BAER): This test is performed in some patients to provide information on brain wave activity as a response to clicks or tones. The patient listens to these sounds while wearing electrodes on the scalp and earlobes and earphones. The electrodes pick up and record the brain's response to these sounds.
- Scans of the head: If other tests show that the patient may have acoustic neuroma, magnetic resonance imaging (MRI) is used to confirm the diagnosis. MRI uses magnetic fields and radio waves, rather than x-rays, and computers to create detailed pictures of the brain. It shows visual “slices” of the brain that can be combined to create a three-dimensional picture of the tumor. A contrast dye is injected into the patient. If an acoustic neuroma is present, the tumor will soak up more dye than normal brain tissue and appear clearly on the scan. The MRI commonly shows a densely "enhancing" (bright) tumor in the internal auditory canal.
- An acoustic neuroma typically grows on one of the branches of the 8th cranial nerve—the nerve that serves as the conduit for information from the ear to support hearing and balance.
- More than 80% of patients having acoustic neuromas have tinnitus. Tinnitus is usually described as hissing, ringing, buzzing or roaring. Tinnitus is often said to be high pitched. In some patients the tinnitus is a pure tone, and in others the tinnitus is a noise. Many patients with acoustic neuroma have combined tinnitus and hearing loss.
(Printed with permission of Johns Hopkins Medicine) http://www.hopkinsmedicine.org/
Being a caregiver is one of the most challenging roles a person can experience. Caregivers are people from all walks of life; they are spouses, parents, children, friends and siblings who have a special bond with their loved one. If you are a caregiver, you are not alone. A joint study conducted by the National Alliance for Caregiving and the AARP found that an estimated 43.5 million Americans age 18 or older are providing care to an adult.*
*2015 National Alliance for Caregiving in collaboration with AARP
Many new issues arise when a person is diagnosed with an acoustic neuroma. Caregivers devote tremendous time and energy into meeting these new challenges in an effort to care for and improve their loved ones' lives, while trying to balance their own needs and responsibilities. Caregivers are special people with overwhelming responsibilities. We offer the following suggestions to help caregivers take care of themselves:
- Take care of your own physical and mental health needs. You've probably heard this before, ”You can't take care of someone else if you don't take care of yourself.” Be aware of your stress levels, take breaks, exercise, and talk to a friend. Only you know what works best for you.
- Ask for help! We all have our limitations, be aware of your strengths and abilities. When people offer to help, accept the offer – caregiving is definitely more than a one person job.
- Be flexible. You will encounter situations where you may have to re-evaluate your needs and priorities. Things you did in the past may have to be looked at in new ways and new strategies developed to help you accomplish your tasks and manage your new responsibilities.
- Educate yourself about your loved one's condition. This will help you better communicate with medical health professionals and other health care providers about treatment and care.
- Seek resources. Ask yourself, ”What people/organizations/information will make my caregiving easier/better?” Be specific and selective about the resources you need. See Caregivers Resources for useful tools for caregivers to utilize in finding additional information and support.