Member survey?

[AlistairMc]

Hi, one thing that's surprised me on this forum is the very wide variety of people's experiences: what may have caused their T and in some cases, what has helped alleviate it (or not). It seems to be that this would be a good place for an in-depth survey on possible causes, subjective experiences, remedies and their effectiveness... with the aim of helping to give researchers a few possible starting points. Sure there'd need to be some privacy considerations and anonymisation of results, but I think a survey would add depth to the anecdotal evidence here. What do you think?

[TinnitusUKPat Partner]

Hi Alistair. One way to do that might be to complete the 'Your Needs' assessment which is accessible via your Health Unlocked member's profile.

To the best of my knowledge, this is anonymised and is presented to any Health Unlocked community to give administrators and moderators a picture of the concerns about health issues present within the community as a whole.

On a wider level, when you see a specialist or GP, you might take the THI - tinnitus handicap inventory - survey, which is designed to identify impacts, options for treatments and the like.

[Happyrosie in reply to TinnitusUKPat]

What is this inventory you suggest, please? I’m not sure I understand you?

[TinnitusUKPat Partner in reply to Happyrosie]

Hi Rosie.

The Tinnitus Handicap Inventory is a survey given by doctors and specialists to determine the impact which tinnitus is having on a person's life. You can see an example of that here - starkeypro.com/pdfs/THI_Que...

It's a subjective tool, but it's one way to open a conversation with a doctor or specialist on the impact of tinnitus. A simplified version has been proposed, to reduce the descriptive burden on patients.

[Happyrosie]

Sounds like it might be a plan - what about contacting the T charity directly to suggest? These things are expensive, though!

[GarryOKeeffe]

As a sufferer of tinnitus it would be helpful to know what other people have tried and what success they have had and just as important what failed.

A quick search on the internet will show several techniques with dozens of people replying on how it cured their tinnitus overnight. I find these replies hard to believe. There are a few companies offering neuromodulation for several thousand pounds and claiming a 70% success rate, one Indian company claims a 90% success rate and charges a few hundred pounds. An Australian company offers an 8 week package and also claims that tinnitus can be cleared, again with a 70% success rate and again charing thousands.

I would like to see a survey of these treatments with independent reviews from people who have no connection to the companies offering the treatment. I'm very sceptical of any review given on the internet.

[TinnitusUKPat Partner in reply to GarryOKeeffe]

I think that the BTA's position would be to exercise caution around using any online testimony as a reason to buy a device or pursue a treatment.

The placebo effect can often be in play, particularly with any medical treatment which somebody has invested in financially and emotionally.

[Wringing1212 in reply to GarryOKeeffe]

Well put.

[Wringing1212]

It's difficult to weed out the elixir salesmen. Long time survivors of T know how we want to react to any possibility of relief, making it tempting for opportunists to exploit our delema.

I think, that the grass roots idea of introducing public surveys or studies, outside the dogma of medicine might lead to a break through. Eluding to existing protocol or structures that build themselves on those same hopes as the medicine man, have proven ineffective thus far in our arena. Just watching the redundancy of this platform, and the drop off of followers can quell an innovators hopes. I think Alistairs comments are worth a second look. Maybe the system gets the better of us?

As for online testimony, that's the closest thing to reality we can get. Real people, real experiences, and hopefully, real wisdom.

P.S. My urologist felt the publics input and the broadsweeping input from the Internet, threatened science. Thanks to the internet, ten years later, I've still got my prostate and going strong. "Eat tomatos!"