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AGM Meeting – 2022

It certainly has been a busy year for the committee, with big steps taken to improve our digital platform in order to support sufferers where ever they are Our AGM Meeting will be held on Saturday 4th June as 10am Sydney time.  For members who would like to attend the meeting in person the address […]
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‘Treatment Outcomes in Trigeminal Neuralgia–A Systematic Review of Domains, Dimensions and Measures’

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Collecting information about TN patients – by Helen Tyzack

When visiting my GP, my neurologists and neurosurgeon I have been asked all manner of questions. After trying out a new medication my GP has asked ‘how are you?’. My responses were usually phrases such as, ‘I didn’t have any side effects’, or ‘it made me dizzy’, or ‘I am putting on weight’.

Immediately after surgical procedures I was asked ‘how are you feeling’ and my responses confirmed their thoughts that the procedures/operations had been a success – because in that moment I felt terrific. Apart from anything, coming out of a general anaesthetic I was so pleased to be alive still.

Days after such meetings, the situation changed and my emotional state was never explored. Presumably cursory snap judgements have been made by all of these members of the medical professions, and their time constraints prevent them following up.  It is commonly accepted, at least in the circles in which I move, that poor emotional health can weaken your body’s immune system.  On this basis I hope to force a change next time I am with a medical professional when obtaining help for my trigeminal neuralgia, and tell them how I am really feeling not just the superficial responses I have given previously.

With this in mind I found the following article to be telling. While this scientific paper may be difficult to understand at least in places, the conclusion which the researchers arrived at is clear:

Patients and clinicians currently have no reliable way of comparing outcomes in TN especially between medical or surgical treatments. Trials of medical therapies are said to be positive if 50% of patients are pain free, whereas surgical outcomes require 100% pain relief if they are said to be successful.

A summary of their results where n means number, provided:

Most studies collected data on pain (n = 459) and side effects (n = 386) domains; however, very few collected data on the impact of treatment on physical (n = 46) and emotional functioning (n = 17) and on patient satisfaction (n = 35). There was high variability on outcome measures used for pain relief (n = 10), pain intensity (n = 9), and frequency of pain episodes (n = 3).

The full article can be downloaded from link below

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3.2 Microvascular Decompression: Attacking the Root of the Problem

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 3.2 Microvascular Decompression: Attacking the Root of the Problem by Kenneth F. Casey, MD [Kenneth F. Casey MD FACS is a Past-President of the Medical Advisory Board of the American Facial Pain Association. He is an Associate Professor of Neurosurgery and Physical […]
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Predictive Value of Magnetic Resonance Imaging

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Many have been through a magnetic resonance imaging (MRI) process. The intention has been to see whether a blood vessel is resting/pumping on the trigeminal nerve. This is not a diagnostic tool because some people can have this situation and never feel pain or discomfort on the trigeminal nerve. In some cases, a blood vessel does not appear to be touching the nerve yet some people feel pain. The MRI is simply part of a broad information gathering process.

The following research paper, using specific medical language which may make reading a challenge, may be of interest because it examines the usefulness of MRIs.

Titled Predictive value of magnetic resonance imaging for identifying neurovascular compressions in trigeminal neuralgia, this research was published in the journal Neurología (English Edition) Volume 34, Issue 8, October 2019, Pages 510-519.

[Download not found]
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Member Story – Gail Wells

Gail is a member of our Facebook group and she shares her story Hi there! I firstly developed pain behind my left eye. Debilitating pain! Unbearable pain, it was around 4.00am, and it woke me up with a vengeance. Two weeks previously, I had experienced cataract surgery and my first thought was that for some […]
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TNA Australia Webinar – Dr Ben Jonker

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TNA Australia are delighted to provide the recording of Dr Ben Jonker’s presentation covering

“Which Procedure Should I Have For Trigeminal Neuralgia”

The Association has committed to create four educational webinars a year and we are delighted the members of our Medical Board are providing their expertise to help all sufferers of Trigeminal Neuralgia navigate their diagnosis and treatment.

The opportunity to work in the digital space has been provided by a grant to support our work in a Tele Health capacity, by The Cromwell Property Foundation and we acknowledge their generosity

Dr Ben Jonker is a member of the Associations Medical Advisory Board and you can read more about him using the below link

Central Neurosurgery | Dr Benjamin Jonker | Home

 

 

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Donations End of Financial Year Gift

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We have been delighted to receive a number of big donations this month.  It got us a bit curious what could be driving these wonderful gifts, which will make a huge difference to the services we can provide

So thanks to google I did a search and found the attached info.

Whatever the reason, every donation we receive is a huge gift and offers opportunity to reach all sufferers

 

 

Australians give at the end of the financial year – find out why

 

 

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Nerve Combing – Dr Jeremy Russell

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Early in 2022, a member of the TNAA Medical Advisory Board, Melbourne based Dr Jeremy Russell offered a webinar to Tasmanian TN sufferers. During his presentation he explained how he had conducted some ‘combing’ of the trigeminal nerve as a treatment to stop pain.This 2000 article addresses a few matters associated with nerve combing.
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Support Network Animated Design

We have been granted a free subscription from the team at Canva due to our Charity Status
So we tapped into our design brains and created an animation which shows what we do. We hope you like it

https://www.canva.com/design/DAE_PDWPS9k/1knIB5_5-93y95pV-WVkGA/watch?utm_content=DAE_PDWPS9k&utm_campaign=designshare&utm_medium=link&utm_source=publishshareli

 

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UK TN Sufferer Tells His Story

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This video is about a UK TN sufferer telling his story,  which hopefully will give encouragement to our sufferers who are considering a MVD procedure