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

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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,

[Download not found]

Article by Helen Tyzack

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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

[Download not found]
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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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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.
  • [Download not found]
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Whole Person Pain – Empowered Relief

The Association recently were provided details from Stamford University of the presentation by Dr. Beth Darnall, PhD – Associate Professor, Department of Anesthesiology, Perioperative and Pain Medicine

A video recording of last week’s program called “Whole Person Pain” is now available

 The presentation in 90 minutes in length and has details of many study approaches.  It is very relevant to the USA sufferers but there are plenty of tips to help you manage pain.  This presentation is one you can dip in and out of to view.  We hope you find it interesting and educational

Whole Person Pain – Empowered Relief – YouTube

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Canadian Case Study – Can Chiropatric Treatments Reduce Trigeminal Neuralgia Pain

The management of pain as a Trigeminal Neuralgia sufferer is constantly being considered

Treatments other than medication can include meditation, relaxation tecniques and manipulation performed by a chiropractioner

It can be bewildering working out which approach to take, especially when pain levels are high

The attached study has been produced by The Journal of the Canadian Chiropractic Association

The study is a long read but provides a good assessment of whether chiropractic interventiins can reduce pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921783/

 

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Stanford’s Facial Pain Program – Whole Person Pain Care: Latest research and scalable treatments for pain and opioid reduction

Here at TNA Australia we link with International Organisations who deal with Trigeminal Neuralgia and other Facial Pain conditions

We have registered to be provided with information about Webinars and Research from many of these providers.  One of the unexpected wonderful outcomes of the COVID pandemic is the way many International and National Organisations have pivoted and now provide access to presentations and webinars over the web.  It is sensational to be able to be in an audience listening to skilled professionals on a wide array of subject, while sitting at home.

Why not get a few people together to view the presentation and have a chat about what you have learnt, share a coffee and cake together and workshop how you can utilise the advise in your lives

If you get a few friends and family together, take a photo and send it to members@tnaaustralia.org.au and we will publish here.

Our new website is our portal to our members and people looking for information – we add content regularly on subjects we feel may be of interest.  We are not sponsored by any other organisation and we do not endorse the content – it is provide to assist you to make decisions for your individual circumstances 

Stanford’s Facial Pain Program presents:

Whole Person Pain Care: Latest research and scalable treatments for pain and opioid reduction

Wednesday, March 9, 2022 5:30pm Pacific Time

Thursday , March 10, 2022 12.30pm Sydney Time

 

Speaker:  Dr. Beth Darnall, PhD – Associate Professor, Department of Anesthesiology, Perioperative and Pain Medicine

Beth Darnall, PhD is Director of the Stanford Pain Relief Innovations Lab. She leads NIH and PCORI-funded clinical trials that broadly investigate behavioural medicine for acute and chronic pain, including $19M in research funding from the Patient Centred Research Outcomes Institute (PCORI). Her primary interests are developing and investigating novel pain treatments that are scalable, effective, and low burden.

Dr. Darnall twice briefed the U.S. Congress on the opioid and pain crises, and provided invited testimony to the FDA on iatrogenic harms associated with opioid tapering. In 2020 she joined the NIH Interagency Pain Research Coordinating Committee as a scientific member. From 2020-2021 she served as a scientific member of the Centre for Disease Control (CDC) Opioid Workgroup of the Board of Scientific Counsellors of the National Centre for Injury Prevention and Control (BSC/NCIPC).

Her work has been featured in outlets such as The New York Times, Scientific American, NPR Radio, BBC Radio, and Nature. In 2018 she spoke on the psychology of pain relief at the World Economic Forum in Davos, Switzerland.

Register

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Deloitte Access Economics Report – The Cost of Pain in Australia

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Sufferers of Trigeminal Neuralgia suffer chronic pain and very often treatment is made harder due to the  clinicians,  who treat the patient, do not always work collaboratively through the diagnostic and treatment process.

The Deloitte report is very interesting because it highlights the huge benefits from multi departmental care.

“Deloitte Access Economics was commissioned by Painaustralia to establish the local and Australia wide socioeconomic impact of pain, and to conduct a cost effectiveness analysis of health interventions that could reduce the impact of pain in Australia.

In this report, evidence has been presented to demonstrate the burden of chronic pain in Australia, including health system, productivity and carer costs, other financial costs and the loss of wellbeing.

The key findings include:

  • 3.24 million Australians were living with chronic pain in 2018. 53.8% are women and 68.3% are of working age
  • For the majority (56%) of Australians living with chronic pain, their pain restricts what activities they are able to undertake
  • The total financial cost of chronic pain in Australia in 2018 was estimated to be $73.2 billion, comprising $12.2 billion in health system costs, $48.3 billion in productivity losses, and $12.7 billion in other financial costs, such as informal care, aids and modifications and deadweight losses
  • People with chronic pain also experience a substantial reduction in their quality of life, valued at an additional $66.1 billion
  • The costs of chronic pain are expected to increase from $139.3 billion in 2018 to $215.6 billion by 2050 in real 2017-18 dollars
  • An extension of best practice care to Australian patients could lead to
    • substantial savings and better health outcomes.

    Published: April 2019″

The full report can be downloaded below – it is a long read but the index is extensive so users can hone into the areas that interest them

[Download not found]

Deloitte have also provided a shorter presentation covering the key points

[Download not found]
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Joint Consultation Study

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Our organisation have links with medical and dental experts around the world, all working hard to diagnose, support and treat sufferers of Trigeminal Neuralgia.

We publish our newsletter to them and they reciprocate by providing new research, articles and advice for the benefit of our members

In November we were contacted by Prof Joanna Zakrzewska, having read our September Newsletter featuring pain and patient decision making, she shared with us some research around GP and Neurosurgeon joint consultations.

The research center’s around patients satisfaction by using a collaborative model of consultation

We are delighted to publish the research and we hope you find it interesting

The papers are titled below

Trigeminal Neuralgia Guidelines 2021 V4

  • Ottowa Decision Guide 2015
    • [Download not found]
  • Poole Satisfaction with a MDT Clinic Decision Making Br J Pain 2021
    • [Download not found]
  • Key MDT Multi Disciplined Team
    • [Download not found]

Provided by

Professor Joanna M. Zakrzewska MD, FDSRCS, FFDRCSI, FFPMRCA
Consultant facial pain
Royal National ENT &Eastman Dental Hospitals

Floor 3, 179a Tottenham Court Road, London, W1T 7PA