Vestibular Disorders
Includes Dizziness, Inner Ear Disorders and Meniere's Syndrome.
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National
The Acoustic Neuroma Association (ANA) is a membership organization for patients with acoustic neuromas. An acoustic neuroma is a benign tumor on the nerve that serves the inner ear. It can affect both hearing and balance. ANA offers information and support for people who have been diagnosed with or suspect they have an acoustic neuroma. This organization also supports research and offers information for medical professionals, publishes a quarterly newsletter and offers booklets with information for patients. Their website also provides information about support groups for patients and offers links to more resources. ANA is located at 600 Peachtree Pkwy., Suite 800, Cumming, GA 30041. ANA can be contacted by phone at (877) 200-8211, Fax: (877) 202-0239 or by e-mail at info@anausa.org.American Academy of Otolaryngology – Head and Neck Surgery (AAO-HNS) is a membership organization for physicians that specialize in the treatment of disorders of the ears, nose, and throat, and some head and neck conditions. The AAO-HNS website offers articles on a long list of conditions under “Health Info.” including dizziness, motion sickness, Meniere’s Disease, autoimmune disease of the inner ear, and the causes of balance problems. The publications available at the AAO-HNSF Store are primarily written for physicians, but there are some on the list written for patients. Links to other websites are available to professional members of this organization. The AAO-HNS is located at One Prince St., Alexandria, VA 22314-3357. AAO-HNS can be reached by e-mail at info@entnet.org, by phone at 703-836-4444 or 703-519-1585 (TTY or voice), or by fax: 703-519-1587.
Hearing Health Foundation was founded in 1958 to raise funds for research about hearing and balance disorders. In 1960, DRF established the National Temporal Bone Banks Program to encourage people to donate their temporal bones when they die for inner ear research. (The temporal bones contain the inner ear structures.) The donor program has become the NIDCD National Temporal Bone, Hearing and Balance Pathology Resource Registry.
The DRF website has information about “Meniere’s Disease”, about dizziness and balance disorders under “Hearing and Balance Restoration-Research areas”, and a link to the Temporal Bone Registry. A link to very good information about endolympatic hydrops will be found on the Meniere’s Disease page.
DRF publishes a magazine called “Hearing Health”. The contents of current and past issues are listed on the website with links to related articles. The emphasis in “Hearing Health” is on hearing and hearing disorders. The “Resource Directory” lists four additional resources under Meniere’s Disease. The Deafness Research Foundation is located at 2801 M Street, NW, Washington, DC 20007 or phone: 866-454-3924, 202-719-8088,(TTY)888-435-6104, (fax): 202-338-8182. Send e-mail to info@drf.org
Dizziness-and-Balance.com is a website developed by Dr. Timothy C. Hain, MD of the Chicago Dizziness and Balance clinic. A great deal of information about dizziness and balance disorders is available on this website under “Educational Information”. It covers dizziness and balance problems caused by inner ear disorders, neurological disorders, and various other conditions. There is also a category of information for medical professionals. Another category of material is called “Cultural expressions related to dizziness”. This material is worth looking at. The “Songs and Poems about Dizziness” are particularly interesting. The large amount of information on this website is easy to access. Some of the information is also available on CD’s or DVD’s. Some of the articles on the website are available in Korean or Spanish as well as English. There is also a link on the home page to information about Dr. Hain’s clinic at “Chicago Dizziness and Balance”. Many resources are listed throughout the website. A list of articles written by Dr. Hain will be found at the end of the information about the clinic. There is also a list of 3 books at the end of the page that lists the causes of dizziness.
EAR Foundation (Education and Auditory Research Foundation/Meniere's Network was founded in 1971 to promote education and research about ear diseases. EAR offers information for both physicians and the general public about hearing and balance disorders.
The Meniere’s Network can be found on the EAR Foundation website. Click on "Meniere’s Network" on the right side of this organization’s home page to find information on Meniere’s Disease. They also have a number of publications available about Meniere’s Disease and a newsletter called Steady. Many of the articles from past issues of Steady are available at $1.35 apiece. Click on "Order Literature" to see a list of the publications available (including an introductory subscription to Steady: $25.) with an order form at the bottom. The EAR Foundation also has articles available that you can download to your computer. Click on "Articles" under “Resources” to see a list of these.
After the first page describing the Meniere’s Network, there are several following pages about stress and how to live with it with Meniere’s Disease. Reading these might be difficult for someone who has difficulty staring at a computer screen for very long. Getting to the list of publications and online articles was easier to do.
The EAR Foundation has a chat room for people with Meniere’s Disease. Click on "Online Chat" under “Resources” to access this. This organization also has Support Boards but they are currently off line. To contact the EAR Foundation, send e-mail to info@earfoundation.org
House Institute Foundation was founded by Dr. Howard P. House in Los Angeles in 1946 to do research and educate the public on hearing loss and other ear related problems. The House Ear Clinic: offers treatment for hearing and other ear disorders to patients from around the world.
The House Ear Institute offers information about dizziness and other vestibular disorders on the Clinic website. On the House Ear Institute’s home page, click on “About HEI”, then “House Clinic”, then “House Clinic’s website”. (If you have difficulty accessing the Clinic website, hold down the shift key when you click on “House Clinic’s website”.) On this page, drop down to the box headed “In-House Focus” and click on “More”. Now you can click on one of the topics listed on the right. They include “Dizziness”, “Acoustic Neuroma”, and “Allergies & Autoimmune Inner Ear Disease”. The article on dizziness offers information about the causes of dizziness, both ear related and non-ear related; a summary of ear related causes of dizziness; and information about the methods of diagnosing and treating ear related dizziness. A number of resources are listed under “Industry Resources”.
The House Ear Institute publishes “House Calls” magazine twice a year. House Ear Institute is located at 2100 West 3rd St., Los Angeles, CA 90057 or phone: 800-388-8612, 213-483-4431, 213-484-2642 (TDD, fax: 213-483-8789 or info@hei.org
Inner Ear Balance and Dizziness Disorders website is owned by P. J. Haybach, a nurse who has written several books about dizziness and balance disorders. These books include “Meniere’s Disease: What You Need to Know” and “BPPV: What You Need To Know”. Information about these books and over 20 others about vestibular disorders will be found by clicking on “Bookstore”. Most of the books on this list can be ordered from Amazon.com or the Vestibular Disorders Association. The list includes books written by several authors for both the medical profession and the general public.
Click on “Personal Stories” to read some very interesting personal accounts about living with vestibular disorders and the difficulties people have finding a proper diagnosis. You will also find in these stories descriptions of some of the strange sensations people with vestibular disorders sometimes experience. (If you prefer to print these stories out, allow for about 23 pages.) If you would like to tell your own story about living with a vestibular disorder, send it to Haybach@email.com. There is also a list of current news stories about vestibular issues on the home page. Some of these have links. Older news stories can be found at “Old News”.
Medline Plus-Meniere's Disease page is found on the Health Topics pages on the Medline Plus website sponsored by the US National Library of Medicine and National Institutes of Health. This page provides access to information at other websites about Meniere’s Disease in general, symptoms, and diagnosis. (If you have difficulty accessing these sites, try holding down the shift key when you click on a link.) Information on other vestibular disorders can be found on this website’s Dizziness and Vertigo page. The Dizziness and Vertigo page includes access to information about treatment, diet, and rehabilitation. Information on this website is also available in Spanish. US National Library of Medicine, 8600 Rockville Pike, Bethesda, MD 20894. Send e-mail to custserv@nlm.nih.gov
Meniere’s Disease Information Center is a website with a great deal of information about Meniere’s Disease. Topics covered range from “What Is Meniere’s Disease?” to “Famous Patients”. Other topics include “Diagnosis”, “Treatment” and “Find Doctors”. There are more than 20 categories of information available at this site. This organization does not answer medical questions or questions by e-mail. Instead, people submit non-medical questions to MenieresBlog.com. These questions and their answers can be accessed from the MenieresInfo.com home page. This site also links to information at many other sites. (Note: If you have trouble accessing the information or questions on this site, or linking to other sites, try holding down the shift key when you click on a link.) This website contains a lot of information and many resource links to other websites. If you can’t watch a computer screen for long periods of time because of chronic dizziness, you may have to take this website in small doses or have a friend or family member search it for you.
MENIERES.ORG is a website where people can communicate with other people with Meniere’s Disease. It does not offer medical information. You can share your experiences or read about the experiences of others on message boards, by e-mail on the “Coping Mailing List," in a chat room, through your personal story on the “Menierian Pages,” or through poetry. The home page also has some of the latest questions and answers from Menieres Forums (part of the Meniere’s Disease Information Center) All the information on this website is free. Some areas require registration and login.
National Institute on Deafness and Other Communication Disorders (NIDCD) is a division of the U.S. government’s National Institutes of Health. NIDCD does research and provides information in the areas of hearing, communication, balance, and other senses. Under “Health Information,” it offers general information about balance disorders and specific information about Meniere’s Disease and vestibular schwannomas (acoustic neuromas). The pages mentioned above on balance disorders, Meniere’s Disease, and acoustic neuromas can be ordered as free publications from the website. NIDCD is located at the National Institutes of Health, 31 Center Drive, MSC 2320, Bethesda, MD 20892-2320. NIDCD can be contacted by phone at 800-241-1044 or 800-241-1055 (TTY) or by e-mail at nidcdinfo@nidcd.nih.gov.
National Temporal Bone, Hearing and Balance Pathology Resource Registry gives people with hearing and vestibular disorders an opportunity to make an organ donation when they die that will advance inner ear research and lead to cures and better treatments for hearing and inner ear balance disorders. The Registry replaced the National Temporal Bone Banks Program (NTBB) started by The Deafness Research Foundation in 1960. The purpose of this program is to encourage people to donate their temporal bones for inner ear research. (The temporal bone contains the vestibular structures in the ear such as the vestibule and semi-circular canals.) This organization’s website provides information about temporal bone research, the registry, and how to obtain the necessary forms to register as a donor. This website offers a long list of resources. NIDCD National Temporal Bone Registry is located at the Massachusetts Eye & Ear Infirmary, 243 Charles Street, Boston, MA 02114-3096 or phone: 800-822-1327, (TTY)888-561-3277 or fax: 617-573-3838. Send e-mail to tbregistry@meei.harvard.edu
Vestibular Disorders Association (VEDA) is an international organization based in Portland, Oregon that offers information and support for people suffering from inner ear disorders that cause dizziness, nausea, and balance problems. VEDA publishes information about vestibular disorders and how to cope with them. VEDA has support groups located in the US, Canada, Europe, Australia, and New Zealand. VEDA also publishes a newsletter for members called On the Level. On their website they offer information for physicians that want to learn more about vestibular disorders and you will also find a list of physicians who specialize in treating vestibular disorders to help people who may be having difficulty finding a doctor that understands their condition. VEDA can be contacted at (800) 837-8428 (voice mail) or e-mail them from their website.
State Listings
Texas
Ear Institute of Texas is the specialized medical and surgical practice of Dr. Wesley W. O. Krueger that focuses on the discipline of Neurotology. The office is specifically designed to treat all disorders related to the ear and skull base, including all forms of hearing loss, chronic ear disease, otosclerosis, balance disorders (caused by the many different inner ear problems or those problems in the central nervous system), facial nerve dysfunction, acoustic tumors, skull base tumors, and concussion injuries. This website offers information on a variety of vestibular disorders on the lists that drop down under “Dizziness/Vertigo/Balance Disorders” including Meniere’s Disease, BPPV, and acoustic tumors. There is also information about vestibular therapies under “Balance Therapy and Rehabilitation” and information about surgical treatments under “Surgery & Implants”. The pages are designed so that it is easy to go from one topic to another (from Meniere’s Disease to BPPV for example). General questions about hearing and balance disorders are answered on the “FAQ” page (Look for a link at the bottom of a page). The Ear Institute of Texas is located at 18518 Hardy Oak Blvd, Suite 300, San Antonio, TX 78258. Telephone:210.696.4327 | Fax:210.798.2509
International
Canada
British Columbia
B. C. Balance and Dizziness Canada is a support group located in Vancouver, British Columbia (B. C.). This organization provides information and support for people with all vestibular disorders. It also works to educate the public and health professionals about these disorders and their effects on a person's life. BADD holds bi-monthly meetings at St. Paul's Hospital in downtown Vancouver. BADD also publishes a quarterly newsletter called "The Balance Sheet." The B. C. Balance and Dizziness Disorders Society is located at #325 - 5525 West Boulevard, Vancouver, B. C. Canada V6M 3W6, Phone: 604-878-8383 or send e-mail to info@balanceanddizziness.org. This website offers many resources listed on the page titled, "Vestibular Rehabilitation," including links to the following: American Tinnitus Association, Physiotherapy Association of British Columbia, I. M. F. International Meniere Federation (directory of member organizations), and the Acoustic Neuroma Association of Canada (ANAC).
United Kingdom
Labyrinthitis.org.uk is a website developed by two ladies in the United Kingdom who suffer from what they call "uncompensated labyrinthitis". They have developed this website to provide information and support for other people who are experiencing ongoing vestibular disorders. As they say on their home page, the site is written by patients for patients. It is a very good website to help people suffering from inner ear dizziness to learn that they are not alone in their suffering, in being misunderstood by their family and friends, and in having difficulty finding a physician that can tell them what is really wrong. This website includes information about how the inner ear and balance systems work, a list of some of the symptoms a person might experience, the process of getting a diagnosis and some of the tests that might be used, information about VRT (vestibular rehabilitation therapy), and a very good section on coping with the disease and the misunderstanding of family and friends. This website includes stories of their experiences with dizziness written by the two women who developed this website. The stories show that finding help and making progress overcoming inner ear disorders is slow but there is hope. The website also has links to websites with information about vestibular disorders and support groups and a list of three books about living with vestibular disorders. For more information, send e-mail to iliaandemma@hotmail.com
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