Interest Group Acoustic Neuroma

Acoustic neuroma - Internet portal on acoustic neuroma brain tumours.

Latest news on AN and IGAN


IGAN Forum in English - Moderation


Dear readers / forum members

We are pleased to announce that we have now activated the englisch version of the independent IGAN forum.
As an affected person " Subri " overtakes the moderation tasks and supports the members actively in the forum.

Guido Fluri Stiftung, April 15th, 2016


New Study, January 29, 2015

Prophylactic nimodipine treatment for cochlear and facial nerve preservation after vestibular schwannoma surgery.

» See Report


Research Report

Vestibular schwannoma between 1 and 3 cm: Importance of the tumor size in surgical and functional outcome.

» See Report

Guido Fluri Stiftung, December 4th, 2014


New Research report

Gene-expression profiling elucidates molecular signaling networks that can be therapeutically targeted in vestibular schwannoma.

» See Research

Guido Fluri Stiftung, October 6th, 2014


Surgical treatment of patients with vestibular schwannomas following unsuccessful radiosurgery

Dear Reader,

In the forum of this site on the subject of "Operating on previously irradiated AN and / or AN that have previously been operated on" (under "announcements and important information"), the opinions of some board members to the statement by a forum member: "A previously irradiated tumor is better to operate on than one that has been previously operated on." are expressed and commented on.
Prof. Samii from INI Hannover, member of the Medical Advisory Board of IGAN, made available to the IGAN an article from the Journal of Neurosurgery in 2011, which, via a link, can be read here in the German translation.

All persons suffering from AN who are faced with making decisions regarding treatment are strongly recommended to study this paper, even if it is not easy. But the effort is worthwhile because, backed by an extraordinary wealth of experience, it meticulously demonstrates, with rare clarity, how the brain tumor behaves – in a non-treated condition (wait and see), after a partial removal, after irradiation and also partial removal and subsequent radiotherapy. Whilst the decision regarding treatment is nevertheless often an agonizing process for those affected, it can be assisted by the helpful and supportive arguments contained in this article.

Initially, I wanted to highlight certain aspects and findings, but I would prefer to leave that now because if something is highlighted it is always subjective; I will allow you, dear reader, to read the entire article,.
Questions on the above topic could be put to the Forum or submitted via a confidential message.

ANFux, 20.3.2012

» Surgical treatment of patients with vestibular schwannomas after failed previous radiosurgery (PDF)


Factors for the preservation of hearing after gamma knife irradiation of vestibular schwannomas in patients with useful hearing before treatment

Dear Reader,

In the forum of this site on the subject of "Operating on previously irradiated AN and / or AN that have previously been operated on" (under "announcements and important information"), the opinions of some board members to the statement by a forum member: "A previously irradiated tumor is better to operate on than one that has been previously operated on." are expressed and commented on.
Professor Strauss, Halle, a member of the Medical Advisory Board of IGAN refers ??in this context to an article by Japanese surgeons in the Journal of Neurosurgery from the year 2011, which, via a link,  can be read here in the German translation.

It concerns a study over ten years in which 117 patients with an average age of 52 years and an average tumor volume of 1.9 cm² were monitored after gamma knife therapy.
The findings were interesting and provided  some completely new insights, for example:

  • concerning the optimal point of time to activate the therapy,
  • that "wait and see" is not conducive to retaining the hearing,
  • that both the tumor size and tumor location affect hearing retention after gamma knife irradiation,
  • that, however, very accurate treatment planning, the provision of an optimal dose of radiation (especially at the tumor edge!) and, in particular, the level of hearing before irradiation (!) are decisive factors in this,
  • that a hearing level of GR class II  could well lead to a total loss of hearing,
  • and finally, that the hearing loss continues even three years after radiation therapy.

All these findings were derived with the clear tendency not to condemn the irradiation of the AN by gamma-knife but to defend it as an established variant.

All persons suffering from AN who are faced with making decisions regarding treatment are strongly recommended to study this paper, even if it is not easy.But the effort is worthwhile.

The decision regarding treatment is still a difficult process and often a subjective matter, but this provides some additional objective arguments.

With these thoughts I leave you the above-mentioned article.
Questions on the above topic could be put to the Forum or submitted via a confidential message

ANFux, 20.3.2012

» Factors associated with hearing preservation after Gamma Knife surgery for vestibular schwannomas in patients who retain serviceable hearing (PDF)


IGAN was present at the Congress of Skull Base Surgeons

The 18th Annual Conference of the Deutsche Gesellschaft für Schädelbasischirurgie, DGSB, (German Society for Base Skull Surgery) was held October 1 – 4, 2010 in Erfurt.

The program focused primarily on quality assurance in skull base surgery and on the interdisciplinary treatment of acoustic neuroma, and thus offered the opportunity for continuing education and also for contact with German ENT and neurosurgeons.

In two "congress reports", I have compiled and written down facts, figures, insights and experiences, and I try to evaluate the Congress.
I hope you enjoy reading the two contributions in the "Announcements and Important Topics" forum.

ANFux, Moderator, 14.10.2010


Guido-Fluri Foundation established.
IGAN under its roof.

As already reported by Mr. Fluri on this homepage, from July, 2010, Mr. Fluri has brought together his multifaceted initiatives and activities in the medical and social area in a foundation named after him.
Interested parties can obtain more information on a homepage that has been made available in the meantime:
http://www.guido-fluri-stiftung.ch/de/


IGAN leads the Guido Fluri Foundation.

IGAN, founded in 2006 by Guido Fluri, Cham, shall lead a foundation for global brain tumour patients.

"In the last few years we have achieved a great deal. Today the IGAN site has become a global leading platform for the acoustic neuroma disease. The appeals in the forum alone and the position of the link to this site from medical institutions show the high level of its acceptance. For that I thank those who have spent many hours building this site. I would like to further improve the quality and I am ready to make additional funds available in the future for the acoustic neuroma disease.

I would like to enlarge the foundation's purpose and make a commitment to research in glioma. Glioma, particularly the Glioblastom Multiforme WHO IV, are still difficult to treat and those affected generally die within a year. It is of great importance to me that the people who meet this fate are also supported by this foundation".

Guido Fluri, 20.7.2010


The general knowledge and debate newspaper "Beobachter" is campaigning for acoustic neuroma patients in Switzerland.

The path for Swiss patients should be made simpler to gain access to competent acoustic neuroma centres.

Under the title "Patient Schweiz will keine Hilfe" [Swiss patient wants no help], the author Markus Föhn depicts the situation, in issue 10/10 of 12th May 2010, facing Swiss people suffering from acoustic neuroma brain tumours who have chosen an operation. Not the qualifications of Swiss doctors, but rather the low number of cases alone – around 40 operations per year, and these divided between five infirmaries – prevents a competency centre from being developed in Switzerland for this rare disease.

Although the European Tribunal 2009 has cleared the way in principle for unlimited Europe-wide health care, a few countries are still following misconceived principles and complicate the path to competency centres abroad for patients, particularly by refusing to meet the costs of operations.

Through Mr G. Fluri's commitment, as the founder of the Acoustic Neuroma Interest Group, IGAN, and several active IGAN forum members such as Biene, ebi, Säntis and sewi, this problem is now being publicly discussed in the "Beobachter" with its mass circulation (over 300,000 copies and over 900,000 readers). Up until now, the IGAN forum was the only portal to make this grievance public. Now all Swiss AN patients have the chance, in the "Beobachter", to make their experiences and opinions public. The online forum for this newspaper offers a platform for this. We can only hope that many of those affected make the most of this opportunity.

Click here for the quoted article in the "Beobachter" with the first letters to the editor and readers' opinions. Why not join them!

» http://www.beobachter.ch/leben-gesundheit/medizin-krankheit/artikel/spitzenmedizin_patient-schweiz-will-keine-hilfe/

ANFux, Moderator, 24th May 2010


In the press about AN or IGAN

» Schweizer Selbsthilfegruppe fördert Forschung hallescher Neurochirurgen.
[Swiss self-help group promotes research by Halle neurosurgeons.]

» Interessengemeinschaft Acoustic neuroma fördert Tübinger Neurochirurgie
[Swiss self-help group promotes research by Halle neurosurgeons.]
The acoustic neuroma interest group promotes Tubingen neurosurgery
The science information service (idw) reports that IGAN is promoting the research project at the University Hospital of Tubingen on regeneration of auditory nerves. That was on 8th August 2008 on occasion of the visit from IGAN members to the University Hospital of Tubingen when it was agreed. (Please also see the note under the heading "Research" on this homepage).

» Medizintechnikpreis für mikrochirurgisches Verfahren im UK Tübingen (11/2006)
[Medical Technology Prize for the new microsurgery procedure at the University Hospital, Tubingen (11/2006)]

» Medikamente vor und während Acoustic neuroma-Operation reduzieren Risiko einer Fazialisparese (2006)
[Medication before and during acoustic neuroma operations reduce the risk of facial paralysis (2006)]

» Automatisiertes Neuromonitoring bei Acoustic neuroma-Operation in Halle
[Automatised neuromonitoring for acoustic neuroma operations in Halle]

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