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Invisible Disability in Australia

People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects.
4.5 million Australians live with conditions which are invisible to the casual observer.  Our community who deal with the pain of trigeminal neuralgia are well aware of this.
As a society we still suffer from the stereotype belief that if you can’t see the disability you must be faking, or trying to get off work or some other nonsense.
The following article is by the ABC’s Specialist Reporting Team’s Evan Young
This article is very insightful and we encourage all of our members to take heart and have the courage, when you can, to tell your story.  Education, information and changing attitudes is the only way forward

“Acceptance means so much more than many people understand, just to have someone be like, ‘I see you,’ because we feel invisible so much of the time.”

Connect to community’s, attend online and face to face support groups, talk to family and friends.  Together we can change society’s negative views about invisible illness’s which have a devestating impact on our sufferers.

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President’s Monthly Musings – Nov 2022 Year of Progress

It has been a busy month again and I cannot express how proud I am of our community.  So much progress has been achieved in the last year and I feel it is appropriate to spend some time and reflect on just how far we have all come.  We are heading into the Christmas season and soon everyone’s focus hopefully will be with family and friends celebrating together.

To appreciate the massive amount of change, I must cast my mind back to June 2021 not long after I became secretary, and talk turned to creating a new website.  The fact that the committee had already sanctioned a new website was hugely exciting to me, because this was an area that matched my professional background.  In the next few months, the web design was agreed, and work started.  Normally in a business arena it would take a full year to design, collaborate and create a platform to just get to a test stage.  However, we pulled it off in 4 months and went live in November 2021.

Although we had been working in the trigeminal neuralgia field for 20 years, we were not easily accessible.  The new website allowed our members to manage their own accounts, receive automated reminders to renew membership, pay in a way that suited them, contact us, provide members stories, find news articles and feel connected to our community.

Having this platform has enabled the association to offer opportunities to volunteer and help our community.

This year we have recruited a new committee member, Sarah Wilkinson who is contributing to the decision making and hopefully will be able to set up a young patient advocacy platform.  To have to bear the pain of trigeminal neuralgia at any age is difficult, but to have to deal with it from such a young age is heart breaking.

And we also welcomed the return to committee of Helen Tyzack elected as the Vice President.  Helen has worked tirelessly for months on our strategic plan and new updated constitution along with her duties at Tasmania’s support group leader.

Gay Roberts in Adelaide has taken over the running of that support group.  She gained the confidence to do so by working through our online training program, reinforcing her knowledge and providing a reference library to support her.  She currently runs face to face support meetings but next year she is keen to offer online meetings for her regional members.  How wonderful that Gay has progressed with such confidence, from telling us she couldn’t deal with technology, to wanting to run meetings using technology.  I am enormously proud of her.

Kim O’Donnell contacted us in August, keen to set up a support group in the Toowoomba / Lockyer Valley area.  I was camping at Evens Head when I received her message and practically danced with excitement telling Patrick when he returned from surfing.  Kim also worked through our training modules, and she is now offering a fortnightly online meeting on a Tuesday at 10.30am.  You don’t have to live in the area to connect to Kim, she is intent on helping anyone with trigeminal neuralgia, to support and offer advice.  She has set up a facebook group to advertise her meetings, so please do join her and have a chat.

This month we were contacted by Jodie Schneider from Townsville, who is interested in training as a support group leader and hopes to run a support group in Townsville.  Jodie contributed some wonderful pictures of Townsville for our Light Up in Teal International Trigeminal Neuralgia Awareness Day.    We welcome her to our team, and I wish her every success in her training.  I am sure Jodie will create a wonderful support community in her area.

We are producing our last webinar of the year, a presentation by Dr Jeremy Russell – click HERE for details.  How wonderful that we were able to produce 4 webinars this year to provide education and information.  Our support group leader volunteers make a difference to someone at every meeting.

quote from a former member

I’ve been a member since 2007 when I was in absolute agony when the condition I’d had since 1997 flared up .  The support I received from everyone there was so wonderful, as I always had to explain what was wrong with me  as nobody have ever heard of it.  Fortunately the wonderful Dr Dexter operated in February 2008 & I’ve been painfree ever since.  I kept going to meetings at Toongabbie for some years to tell my story so that people would know there could be a happy ending.  Thanks for the memories.

quote from a donator

My pleasure my Mum is a TN sufferer, she has for the past 10 years, truly a remarkable woman to have the strength to manage this awful illness.
Hopefully we can find a cure🙏🏽

So, as we head into the Christmas Season – I wish all of our volunteers and members the very best of greetings.  I hope that pain stays away, the weather stays mellow, the food is easy to eat and chatting brings you pleasure.

here is to 2023 – remember “you are not alone”

 

 

 

 

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Factors that may affect recurrence of trigeminal neuralgia after percutaneous balloon compression

Most sufferers with trigeminal neuralgia have heard of the surgical treatment, Microvascular Decompression (MVD for short), but fewer know about percutaneous balloon compression.

I can speak from first-hand experience of both procedures, and of the success with the latter. That is, I remain pain and medication free after five and a half years since a simple and fast balloon compression procedure crushed my trigeminal nerve.  But I have always wondered and worried that the pain may return. To date I am extremely happy with the situation as are others I know who have undertaken this procedure.

The article ‘Factors that may affect recurrence of trigeminal neuralgia after percutaneous balloon compression’, was researched and written by Wenming Lv,  Wenjing Hu, Lingyi Chi, and Liangwen Zhang and published in Journal of Clinical Neuroscience Volume 99, May 2022, Pages 248-252, can be read here

If you are considering asking for a Balloon Compression procedure, be aware there are risks and side-effects and that your research should be thorough. You need to trust that your neurosurgeon has considerable experience with this procedure, and has informed you of all aspects.

One of the possible side-effects about which I was warned, was that I might have some or a lot of facial numbness on the affected side of my face.  I did have numbness on half an eyelid, half my nose and half the top of my upper lip. In the above article the finding was that numbness, on average, disappeared around three years.  That is about right for me, although on rare occasions in the past couple of years I have a sense of it in my upper lip and nose.  I am delighted to report that the numbness never caused my face to slump or change and has never been visible, it has always been mild, and it has never inconvenienced me.  Having said this, each person is different and the results for another could be dramatically different – so please gather all information from a knowledgeable professional if considering this.  For me, losing the pain and reliance on medication was worth some numbness. I was fortunate to be able to reclaim my life.

Helen Tyzack

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3.3 Balloon Compression Rhizotomy

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 3.3 Balloon Compression Rhizotomy By Jeffrey A. Brown, MD, Neurosurgeon, NY University – Long Island School of Medicine Balloon compression rhizotomy, first conceived by Dr. Sean F. Mullan and Dr. Jeffrey A. Brown, is a simple and effective outpatient treatment for TN. […]
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A research on quality of life score (QOLS) of patients with trigeminal neuralgia

A research on quality of life score (QOLS) of patients with trigeminal neuralgia

When I visit my medical professionals they always ask questions in order to be sure of the diagnosis, and to be sure the treatment they recommend is appropriate to me personally.

I have discovered the following article which may interest you.

While it contains scientific language and in parts may be difficult to work through, you can read at the end before the list of references, a list of questions with the words for a five point rating system. There are some questions on that list that I am going to remember so when I visit my GP or Neurologist or Neurosurgeon I need to provide the answers, even if not asked – because I believe it may make a difference and help them help me.  Perhaps you might feel this way.

The article, ‘A research on quality of life score (QOLS) of patients with trigeminal neuralgia (TN)’ written by Yejiao Luo, Mingjie He, Chenjun Li, and Hongya Yang and published in the

Journal of infection and Public Health Vol. 12 Issue 5  September–October 2019, Pages 690-694,

Quality of life research

Article by Helen Tyzack

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Anxiety in People with Trigeminal Neuralgia and other Facial Pain

Many of our sufferers experience extreme anxiety, even when they have undergone successful surgery.  The fear that the pain can come back at any moment can paralyse sufferers and prevent them leading a fulfilling life

We work closely with the Facial Pain Association in the USA who have some wonderful resources – this webinar really helps understand where the fear comes from, how to understand the process and how it can be mitigated

Dr. Leesa Scott-Morrow will discuss anxiety in people with facial pain. This webinar will introduce the brain mechanisms that are involved in the experience of fear and anxiety, including discussion of why these mechanisms interfere with concentration and mental clarity.

There are many types of anxiety.

Dr. Scott-Morrow will discuss the various types and the way treatment may, or may not, differ for each type. Past trauma can leave a person with increased risk for anxiety. The webinar will include some discussion of this problem and discussion of risks and benefits of the various medications that are used to treat anxiety.

In addition, Dr. Scott-Morrow will include discussion about the way in which use of alcohol can become problematic in anxious people.

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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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Predictive Value of Magnetic Resonance Imaging

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.

Predictive value of magnetic resonance imaging

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How to Prepare When Seeking an Orofacial Pain Diagnosis

The Facial Pain Association FPA held a two day conference in January 2022 They had many excellent presentations and one of those was by Dr Gary Klasser, the details of his background is below Specialities and Expertise Dentistry, Orofacial Pain, Temporomandibular Disorders Affiliations Professor, Division of Diagnostic Sciences Louisiana State University School of Dentistry Education […]
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2.3 Botox

FACIAL PAIN: A 21st CENTURY GUIDE For People with Trigeminal Neuralgia Neuropathic Pain 2.3 Botox by Ramesh P. Babu, MD Botulinum toxin is one of the most poisonous biologic substances known to humans. What makes botulinum toxin type A (Botox) safe for use? Even though botulinum toxin is known for its toxicity, administered by well-trained […]
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