Support for carers
|Organisation||BANA (British Acoustic Neuroma Association)|
Tapton Park Innovation Centre
Diagnosis of an acoustic neuroma is generally a distressing time for the AN patient. Some symptoms may have been prevalent for months or even years, creating balance and/or hearing issues that affect quality of life. The diagnosis of a brain tumour is usually, however, unexpected and frightening.
Anxiety and panic attacks are not uncommon as patients familiarise themselves with the condition and what it means to them, or may mean to them depending on any treatment intervention they elect to take. Better techniques and more mastered practitioners are improving outcomes, but risks of permanent related effects, especially the thought of facial weakness/palsy or complete deafness in the affected ear, play heavily on a patient’s mind. Those with a degree of palsy or who develop eye problems can become very self-aware and lose confidence.
Your family member or friend may tire easily. They may suffer headaches or a sensation of pressure or fullness in their head and ear. Their balance may suddenly fail them and their hearing on the affected side can gradually deteriorate. Tinnitus for most is an intrusive and relentless disturbance. Fear of uncertain consequences may make them reticent about undertaking some activities previously enjoyed. These all affect their focus and may shorten their temper. You may need to be a little patient.
With the loss of hearing, those affected can lose their sense of sound direction. It is helpful therefore to clearly explain your location when answering their call for your whereabouts.
The treatment management options for an AN patient are a real dilemma. The point of any decision can be as distressing as at initial diagnosis given the factors to consider for each intervention. This can feel a very vulnerable time, and unfortunately stress can worsen symptoms and effects.
Following any intervention, AN patients will still encounter one or more of the symptoms or effects of the condition, depending on the person, the site of the tumour and the nature of the treatment. In the short term after treatment, these may be exacerbated. It is not realistic to think that your family member or friend will return to the same physical or emotional health as before diagnosis or that all of the symptoms will go away.
Many of the effects of an acoustic neuroma are unseen, but they remain nonetheless. Members tell us that an acoustic neuroma diagnosis is life changing. For some their effects can be debilitating and disabling; balance problems and vertigo being described as feeling as if living on a boat, and tinnitus as an ‘inner scream’. Those with less severe effects do not feel any differently, generally admitting to adopting a new world view because of their traumatic encounter. It is difficult to go back to the person before diagnosis.
Please do consider all of these effects in your relationship with your family member or friend. Showing understanding and adapting are ways that you can help.