Tinnitus questionnaire analysis

Below is Sheila's analysis of the first 60 answers received. You can also see a summary of all responses received so far.

Introduction to the analysis of the first 60 answers

Tinnitus is often regarded as the scourge of patients with Acoustic Neuroma and few manage to escape this distressing condition. Yet little research has been carried out on the impact this condition has on Acoustic Neuroma patients. ANworld was conscious of this and decided it could be beneficial to our List Members to carry out some research into this subject. This was the first survey we had carried out. We received replies from a wide range of patients and as this is our first survey we were delighted with the response. The tinnitus questionnaire remains on the website; please submit your response if you haven't already done so. You are also welcome to join the support mailing list. Here is a summary of the results of our survey so far.

General

60 responses were received to date. Of these,

• 32 replies were from List Members, representing 40% of the current membership, and
• 28 replies were from Non-List Members.

Gender

There were

• 19 replies from males and
• 40 replies from females.

1 respondent did not identify whether male or female.

Age Range of Respondents

• 12 replies were received from respondents in the age range of 20 – 40 years,
• 42 were in the range of 40 – 60 years and
• 6 were aged over 60 years.

However, this does not necessary mean that people in the middle age range are more prone to tinnitus. It could just be that people in this age range were more inclined to take part in our survey.

Side of Acoustic Neuroma

58 patients had Acoustic Neuromas (ANs).

• 31 had left-sided ANs,
• 22 had right-sided ANs, and
• 5 respondents had ANs on both sides.

1 patient was awaiting an MRI to establish whether or not they had an Acoustic Neuroma. The remaining respondent did not have an Acoustic Neuroma, but did have tinnitus.

Tinnitus Now

• 56 of the respondents had tinnitus at the time they completed the questionnaire, whilst
• 4 respondents did not.
  Of these 4 fortunate patients,
  • 2 had never suffered from tinnitus.
  • 1 no longer had tinnitus following radiation treatment.
  • The other patient developed tinnitus following surgery, but was no longer suffering from it.

So our survey demonstrates that not everyone with Acoustic Neuroma suffers from this condition.

One patient reported having suffered from tinnitus for 42 years.

Severity of Tinnitus

Of the 56 respondents who had tinnitus at the time of our survey

• 35 respondents reported mild tinnitus,
• 18 reported severe tinnitus and
• 3 reported very severe.

The remaining 4 patients reported no tinnitus at present.

Remedies

Surprisingly only 11 patients reported they had tried out any remedies to relieve their tinnitus. These remedies have been tried with varying degrees of success in eliminating the condition and are summarised as follows:

• Acupuncture
  • 3 of our respondents tried acupuncture to relieve tinnitus. Whilst 1 patient felt there was some improvement, the other 2 did not derive any benefit from this treatment.
• Elimination of Alcohol
  • Only 1 respondent tried eliminating alcohol to relieve the condition, but reported this had no impact on the tinnitus.
• Elimination of Caffeine
  • 2 respondents tried this approach with one reporting no improvement, whilst the other reported some.
• Maskers
  • 1 patient used a masker and thought this provided some degree of relief. Another used a Brookstone sound machine, and reported this had provided some improvement. Another patient found it helpful to use a clock radio with a nature sound to assist them when going to sleep.
• Medication
  • Feverfew, multi-B vitamins, Rivotril antiepileptic, and half of .25 mg Xanax have all been tried for relieving tinnitus. All were reported as having some success. We are advised that Xanax can only be taken short-term, so this would not provide a long-term lasting solution. One patient took steroids for one month after FSR, but this did not improve or reduce the tinnitus.
• Meditation
  • No-one reported trying meditation for a remedy, though this has been cited elsewhere for inducing calmness and could be beneficial.
• Vestibular Exercises
  • These were found to provide some degree of relief. Since Vestibular Exercises can provide benefits for other aspects of Acoustic Neuroma, others may wish to consider this option.
• Yoga/Breathing Exercises
  • Whilst this did not reduce the tinnitus it did improve the respondent’s ability to cope with the condition. Since yoga can also be used to relieve stress, others may wish to try this approach for themselves.

Noise-induced Tinnitus

In our survey only 2 respondents reported working in a noisy environment, although 14 respondents had noisy hobbies.

Tinnitus before Diagnosis of Acoustic Neuroma

28 of our respondents had tinnitus before they were diagnosed with an Acoustic Neuroma. In 30 cases tinnitus developed after diagnosis, including 1 patient whose tinnitus developed after a specific hearing test.

Tinnitus as an Indicator for Acoustic Neuroma

Only 17 replies were received from people who thought that tinnitus had been helpful in diagnosing Acoustic Neuroma. This is surprising since tinnitus coupled with single-sided hearing loss is often quoted as a key indicator in the diagnosis of Acoustic Neuroma.

Acoustic Neuroma Treatment Options

In our survey

• 28 Acoustic Neuroma patients were treated by surgery,
• 20 were treated by radiation, and
• 13 have received no treatment to date.

1 patient had both surgery and radiation so has been included in both treatment types for completeness.

Position after Treatment for Acoustic Neuroma

• 24 reported their tinnitus worsened after treatment,
• 4 reported an improvement and
• 17 reported that their condition remained unchanged after treatment.
• 15 patients were untreated at the time they completed the survey.

2 surgery patients reported that tinnitus had developed after treatment, but 1 of them no longer had tinnitus. 1 patient treated by GammaKnife did not have tinnitus prior to treatment.

Tinnitus Outcomes after Treatment for Acoustic Neuroma

In this sample, radiation patients fared significantly better than surgery patients regarding tinnitus.

Tinnitus worsened in 3 patients treated by GammaKnife. In one of these patients it worsened four months after treatment. It is not known whether these patients were all treated at the same facility. 1 of these patients had previously been treated by surgery, but their tinnitus only worsened a few weeks after they were treated with GammaKnife, at a later date. A radiation patient whose tinnitus improved was treated by FSR. Another radiation patient reported no longer having tinnitus following treatment. Other respondents did not identify the types of radiation used eg: FSR or GammaKnife.

Impact of Stress and Fatigue on Tinnitus

Stress, fatigue and tiredness were all reported to make tinnitus worse and more noticeable. However since tinnitus itself induces stress it is not known whether the tinnitus caused the stress in the first place. In any event, coping with the condition is sufficient to cause fatigue and can be debilitating.

Impact of Weather on Tinnitus

Although some people believe that the weather has a distinct impact on tinnitus levels on a day-to-day basis, there was no reference to this in any of the responses to our survey.

Perception of Tinnitus

Although tinnitus is widely regarded as an intrusion in our daily lives, one patient commented that the silence is very noticeable when tinnitus is not there and described the silence as deafening.

Fizzy Drinks

1 patient reported that tinnitus was very much affected by the type of drink consumed e.g.: tea, coffee and fizzy drinks.

Conclusions

It is clear from the responses to our questionnaire that tinnitus has a major impact on the lives of all who suffer from this condition. From our survey we can see a wide range of remedies have been tried, but sadly none of our respondents has found a totally satisfactory remedy for tinnitus so far. None of these remedies cured the tinnitus, though yoga/breathing exercises were reported to have enabled one list-member to cope better with the condition. As tinnitus often causes stress and yoga/breathing exercises are widely regarded as beneficial for stress relief, others may like to try this out for themselves. Vestibular Exercises were also identified for providing some relief. Since these exercises can also be used for combating some possible side effects of Acoustic Neuroma, patients may also like to try this remedy.

A high proportion of respondents reported they had not tried any remedial action. This may be because we are conditioned to accept tinnitus, with doctors frequently telling patients that there is no cure. None of our respondents made reference to gingko biloba, which has been reported elsewhere as having beneficial effects. But no one in this sample reported using it.

Interestingly in our survey all but 4 confirmed Acoustic Neuroma patients had tinnitus at the time they completed the questionnaire. Of these 2 had never suffered from tinnitus. 1 radiation patient no longer had tinnitus following treatment. 1 surgery patient whose tinnitus developed following treatment no longer suffered from it. So the survey demonstrates that not every Acoustic Neuroma patient suffers from tinnitus and that tinnitus can disappear following treatment by either surgery or radiation.

Our survey included responses from one person who did not have Acoustic Neuroma and another who was awaiting MRI/diagnosis. So the survey also demonstrates that not everyone with tinnitus has an Acoustic Neuroma. In fact it is known that about 10% of the general population suffers from tinnitus, while the incidence of AN is only about 1 in 100,000 per year.

The tinnitus questionnaire remains on the website; please submit your response if you haven't already done so. If a significant number of additional responses are received we will issue an update to our findings. Similarly if significant information comes forward, such as where a reliable remedy is recommended, we will report this.

Many thanks to all who took part in the survey.