The doctors and health professionals treating people with Ménière's disease are spread over many hospital departments and often different hospitals. Some General Practitioners have little experience in managing Ménière's disease and will meet only one or two people with the disease during their career. In the absence of an integrated service, with a single clinic dealing with all aspects of the disease, the responsibility of co-ordinating your management remains with you.
Managing the disease must not be confined to managing acute vertigo. The task is wider than that. Often doctors seem to be interested only in treatment of vertigo and comments such as "I am pleased your vertigo is under control. I wonder if you could return to work?" or "I don't need to see you again. Come back if your vertigo gets worse and you want some surgery" are not uncommon. Tinnitus and balance problems do not have easy, effective treatments and doctors do like to do something! Progressive deafness is not easy to discuss.
All the medical advice and treatment offered will be aimed at controlling symptoms. Each person's assessment of their symptoms and their effect on their life will be the crucial factor in making the decisions on the type of treatment. Only when assessing hearing loss are tests and measurements useful in deciding on treatment and, even here, sometimes factors such as hyperacusis and distortion can affect the value of the hearing tests and aids. There is evidence that certain procedures may affect disease progression, but this is not proven. Controlling acute attacks of vertigo should mean less damage to the inner ear, and less hearing loss and balance problems in the long term. Similarly some experts feel that early saccus decompression surgery may protect hearing.
There is little definite guidance that the doctor can give, consequently the relationship between the patient and the doctor is an equal partnership, with a common goal. The aim of a management plan is to maintain and improve quality of life.
A management plan can help you to co-ordinate all the various services. Plans are used for other chronic illnesses and symptoms, and can improve quality of life.
The plan asks you a series of questions, and prompts your thinking about the options available. The medical and non-medical treatments are equally important. It is essential to be honest, and working through the plan with someone who knows you well can be helpful. You may not have realised how irritable you have become, or the deterioration in your hearing, or that you are limiting your physical activities. The plan is divided into Stages 1, 2 and 3.