Contacts and help – Notes on being active in the forum

When you register you will be required to provide more profile data.

Furthermore, it will be possible for every visitor to the website to read all contributions in the forum.

A registered forum member enjoys clear advantages:

Methodical tips in the FAQ are available; visible overview list of all members; individual, confidential contact with all forum members is possible; it is possible to write public enquiries and answers.

However, it will not be possible for you to register as a forum member in the future and only give your username.

On registering as a forum member, the following personal details are obligatory from March 2010:

Free choice of username, gender (m/f), year of birth, domicile (without postcode), country (abbreviation).

These details serve, on the one hand, for transparency and on the other hand, expresses an element of personal respect and friendliness among each other.

A signature is not yet obligatory, however it is recommended to forum members at the latest when they are involved as active writers.

Recommendations on the content of contributions

About 30 months of the IGAN forum, over 1,200 forum contributions from over 160 members and countless confidential messages have shown that a contribution is most appropriate when it inspires other members to answer, if it contains as much as possible about the course of the disease and the person seeking advice. This way readers can identify and find parallels with their own case – or even differentiate – and can contribute their own experiences to shed light on the case and find solutions. That is effective for everyone – for those seeking advice, for those answering and for all the passive readers. The latter then possibly contribute to the next case.

Everyone, who is looking for information and advice in the forum (and also in personal messages), should attempt to give as much detail as possible on the following points:

Age and gender of the person affected;

Symptoms – which, since when, in which order, how intense.

Diagnosis and results – when, where and by whom, as accurate a description as possible, possible doubts.

Position, size and formation of the tumour – all three details if possible; homogeneous or cystic; position to the ear canal, cerebullum and brainstem.

Treatment (if already taken place) – which, when, where, by whom; result; possible problems

Anything exceptional such as particularly troublesome discomforts (possibly due to job or leisure activities) or contradictory opinions or uncertainties regarding choice of treatment and doctor or concerns about the consequences of a treatment or other underlying disease.

Current ideas for further procedures concerning diagnosis, treatment or rehab.

This list is not a form and should also not be a structure. However, it aims to be a key word sheet, what is of interest to those asked, and others, and what helps them to write a well-founded response.

Put yourself in the position of those you would like to answer! Have you told them all the important things?

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