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Pain Train – Communicating chronic pain from the patient’s platform

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All aboard!

It’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:

How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?

Pain-Train_Jan2_1000pxAnd, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.

So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?

Stand clear… Pain Train is approaching

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This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

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Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

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Intermission, my solo exhibition in Hobart

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It’s my PN anniversary, eight years (if I don’t subtract the 4.5 years it took me to find out it was in fact PN)!

Obviously time brings on reflection which in turn invites the ‘melancholies’ (yes, I did just make up a word). But I have significant reason to bury the ‘melancholies’ this year with the celebration of my solo show at Penny Contemporary in Hobart.

During a recent four months on the East Coast of Tasmania, I was able to focus on my fine art and decided to document my ‘self’ during this very reflective time. Theo and I took time out to ask ourselves, ‘What next?’ having lost my battle for part-time compensation and realising that sustaining, even a part time sitting job, is difficult for me. It was a most valuable time for both of us.

I’m going to leave the review for Intermission to two brilliant women; Australian artist Barbie Kjar (who will open my show and who’s words appear on the invitation), and my niece Kat Moritz, who’s words appear below.

Consider this post your invitation. View all the works here. See you in Hobart!

Solace 457 x 508 mm. Dec 14. Oil on linen.

Written by Kat Moritz

Artist Soula Mantalvanos’ most recent exhibition, “Intermission” signals a bold departure from previous works into more mature, more personal and much more intimate territory. Aptly named, the exhibition is a series of self portraits, which – as a whole – stand as a bold exploration on the artist’s behalf, of her identity as an individual during this intermission of life that she has found herself in.

Painted in the solitude and anonymity of Tasmania’s still very much unspoilt east coast, well over 500 kms from the artist’s inner city home of Collingwood, the works represent an equally pared back and exposed Soula. Leaving behind over seven years of chronic pain and the familiarity of city life, Soula’s portraits are as much of an experiment on her behalf as they are very tangible markers of a new direction in her work.

“I wanted to ask [all those hard] questions and answer them without influence – put them on paper and exhibit the experience. Perhaps I’m testing my confidence? Perhaps I’m wanting to prove to myself that I’m an artist once again?”

Soula’s portraits may have been born out of a pause in her life but, paradoxically, as a body of work, they speak of journey; of transformation; of maturation. Soula makes no effort to conceal brushstrokes or to avert the gazes of her Soulas that stand before us. Instead she commands them to look us straight in the eye, sometimes with poise, at other times with hope, however, always with sincerity. There is no hiding in the wings for this artist or these works; they most definitely warrant to be positioned centre stage; humbly; quietly, however, centre stage nonetheless.

Exhibition Details

Download the invitation
Intermission Invite pdf Intermission
Self portraits by Soula Mantalvanos
Opening Saturday 7 March, 2015 at 4:30pm by Australian Artist Barbie Kjar

Exhibition continues
MARCH 6 – 25, 2015

LOCATION
187 Liverpool Street Hobart Tasmania
EMAIL & PHONE
info@pennycontemporary.com.au 03 6231 5655 pennycontemporary.com.au

Supported by
Aesop, Chronic Pain Australia, Coal Valley Vineyard and Pain Australia

ANZCA Bulletin: Simple Accident Leads to Life of Pain

Author:
(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. (more…)

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

Yoga for Pain via Skype

Author:
Rachael West(Excerpt from findingyoga.com.au

Rachael West is a yoga teacher, facilitator and educator.

She is an accredited yoga teacher with Yoga Australia with roots in the Krishnamacharya lineage and in 2011 completed a University Diploma in Yogic Education (University of Lille, France) with first class honours.

As the only Australian to study this specialist practice area, Rachael is able to work in a unique space in health care: allowing each person to understand what wellness means to them and to develop the practices that will get them there.

Rachael has also graduated from a Circus in Performance qualification with Greentop Circus in Sheffield, England. Prior to that, she obtained a Bachelor of Civil Engineering (Curtin University, Australia) with first class honours and worked as a civil engineer and facilitator in the public and third sectors.

She is credited with creating the first Gentle Yoga for Fibromyalgia program in WA, allowing sufferers of chronic illness and persistent pain to gently resume exercise, manage the stress of their condition and build confidence in their bodies. The program is allowing them to re-discover their relationship with their bodies.

Changing how we feel about our bodies when they hurt

The Yoga for Pain program is available in person or online and helps those with Fibromyalgia, Chronic Fatigue and persistent pain return to gentle exercise safely, manage the stress of their condition and feel confident about using their bodies.

With a special focus on body awareness and effortless movement, Yoga for Pain is helping people to reconnect with their bodies and change their relationship with pain. (more…)

Arthritis & Osteoporosis WA, Making Sense of Pain 14 – 15 Nov 2014

Author:
Arthritis Osteoporosis WA logo(Report prepared by Melanie Galbraith and John Quintner, Course Co-Convenors. Read more on the Arthritis & Osteoporosis WA website: www.arthritiswa.org.au )

The third inter-disciplinary workshop for health professionals

The late Robert Elvey, world-renowned Perth Manual Therapist, to whom these workshops are respectfully dedicated, would have been delighted at the enthusiasm and expertise with which our course content was delivered. Most of the attendees were physiotherapists, but there were also a few occupational therapists, podiatrists, and nurses.

Presenters & Registrants As well being truly inter-disciplinary, the other outstanding feature was the participation of our seven Pain Champions, who engaged with the attending health professionals in an honest, open and non-confronting manner.

By the end of the second day, everyone, clinicians and patients, had been given the opportunity to experience what it is like to be together in the “third space” – a clinical space for healing where “you” and “me” can become “we”.

Day 1 was about how to create the therapeutic milieu, whereas on Day 2 participants were encouraged to acquire the necessary practical skills and explore how best to apply them to real life practice.

The presenting team, led by physiotherapist Melanie Galbraith and retired rheumatologist John Quintner, included Jane Muirhead, occupational therapist, Vance Locke, psychologist, and Mary Roberts, clinical psychologist (registrar).

Together they shared a wealth of knowledge and experience with participants, and gave them valuable insights into contemporary best-practice pain management and the various language traps to be recognized and avoided in order that they do not inadvertently stigmatise their patients.

Melanie contributed “hot off the press” news from the recent World Pain Conference in Buenos Aires. The most exciting advance was the isolation of the gene FKBP5, whose genetic variants can influence not only the severity of persistent post-traumatic musculoskeletal pain experienced during the weeks following a motor vehicle collision and after early life trauma. The field of epigenetics holds great promise in helping us to better understand many painful conditions and how to manage them.

Our Pain ChampionsThe strength and weaknesses of the biomedical and biopsychosocial “models” of illness were explained and participants were then alerted to an emerging paradigm for Pain Medicine, one that transcends the body/mind dualistic thinking so stigmatizing to many people in chronic pain.

Although analgesic drugs were mentioned during the workshop, their relative inefficacy for most patients with chronic pain was emphasised. Instead, more emphasis was placed on understanding the complex clinical manifestations of stress response activation and the clinical consequences that can be observed when these responses are unable to switch themselves off when the danger or threat is no longer present.

The presenters explained the important role of non-drug contributions to pain management that can be offered by the different health professionals. The common theme running through their presentations was the importance of clinicians listening to, understanding, and continually validating the experiences of their patients. The fact that empathy has two sides (positive and negative) was also acknowledged.

Course registrants were provided with a number of key papers to read prior to attending and were also invited to complete an online questionnaire specifically designed to make them aware of their own beliefs and attitudes towards people in pain. They were asked to again complete the questionnaire two weeks after the course had concluded. The results form part of an important research project currently being undertaken by Samantha Bunzli, School of Physiotherapy, Curtin University.

Judging by the completed Course Evaluation forms it is clear that we are providing a unique learning experience for health professionals and, indirectly, for people in pain. To the best of our knowledge, our course is a unique one

Comments from participants:

“Thank you for holding such a relevant and insightful course.”

“Good experiences. Particularly the opportunity to interact/hear from those with chronic pain. The Pain Champions were very open and should be congratulated. The ideal outcome would be to have a list of practitioners/clinics of “like mind” to refer to if necessary.”

“I have enjoyed this course so much with the added benefit of having pain champions to tie all the information together, Thank you!”

“Good energy, enthusiasm, and, importantly, authenticity. It’s very clear you all have ‘purpose’ in this area. I enjoyed it and the humbleness of the group.”

We thank Jamie Martin, Vanessa Watson, Eva Miller, Barb Grinsell, Ezra Tassone, Chloe Hope Johnstone, and Matt Fletcher for so readily agreeing to take part in this workshop and for sharing so much of themselves with participants.

Expressions of interest are being invited for the next workshop to be held in early 2015. Please contact John Quintner: jqu33431@bigpond.net.au or Melanie Galbraith: MelanieG@arthritiswa.org.au


 

Making-Sense-of-Pain-workshop-flyer2Event Date

14th Nov 2014 to 15th Nov 2014

Time

08.30 – 4.30

Registration Closing Date

7th Nov 2014

Venue Information

Wyliie Arthritis Centre
17 Lemnos Street Shenton Park WA

On-site

About the venue
Lunch, morning and afternoon tea provided.

Contact

John Quintner & Melanie Galbraith
John: 0419956418 jqu33431@bigpond.net.au
Melanie: 0405963658  MelanieG@arthritiswa.org.au

Registration

General
$375.00 ea

Event Description

What sets “Making Sense of Pain” apart from other Pain Management workshops and seminars? We show you how to put this information into practice and improve your interactions with patients to ensure more positive outcomes.

This workshop is dedicated to the memory of Robert Elvey [1942-2013], a WA pioneering physiotherapist (pictured on the flyer).

Event Information

  1. Other courses provide the ‘What’ – i.e. information about evidence-based management of people with chronic pain. We also provide the ‘How’ – how to put this information into practice.
  2. We show you how to improve your interactions with patients to ensure more positive outcomes.
  3. We involve ‘pain champions’ – real people with chronic pain.
  4. Our workshop is highly inter-interactive.
  5. You will have access to an on-line questionnaire.
  6. You can join a networking group of past workshop attendees and presenters.

On completion of the course the participant will be able to:

  • (a) understand the current status of Pain Medicine theory in terms of its relative strengths and weaknesses
  • (b) understand the potential role of dysregulated stress response systems in the symptomatology of chronic widespread pain (Fibromyalgia Syndrome)
  • (c) accurately assess the impact of chronic pain on the individual across social, psychological, medical and functional parameters (including standardized outcome measures)
  • (d) promote behavioural change and institute self-management strategies (participants will be exposed to motivational interviewing, mindfulness practice, relaxation, and techniques of education to promote behavioural change) and to know when referral to other health professionals might be indicated
  • (e) have a deeper understanding of the subjective experience of the person in pain
  • (f) be more aware of his/her personal attitude(s) and communication style when interacting with chronic pain sufferers
  • (g) understand the centrality of the therapeutic alliance in effecting positive change outcomes
  • (h) better communicate with the person in pain based on an understanding of empathy in all its connotations
  • (i) provide a person in pain with an accurate, empathic, and confident explanation of their predicament

Read about the presenters on the full post at Arthritis & Osteoporosis WA’s website: www.arthritiswa.org.au
View images from Making Sense of Pain 2013.

Texan Physiotherapist, Sara Sauder interviews me about PN

Author:

Excerpt from Sullivan Physical Therapy‘s Sara Sauder. Read the full interview on her blogspot.

Sara Sauder's BlogspotSoula Mantalvanos is an Australian artist living with pudendal neuralgia.  She runs a website  and a blog that chronicles her life since developing pelvic pain.  These mediums are helping people around the world learn more about pudendal neuralgia (PN) and how to find the much deserved medical care they need.  Soula has created a book titled Art & Chronic Pain – A Self Portrait which portrays her pain experience in the most beautiful and honest way.  Most recently she gave a talk to 180 pain specialists at Australia’s 2014 Alliance for Improving the Management of Pain.  She is an open person.  Soula was willing to answer my questions and I am thankful for this as she is very eloquent in shedding light into what it is like to live with a pain that no one else can see.

Please know that this is Soula’s story.  Your story is just that – your story.  If you have pelvic pain, I want you to appreciate that each narrative and each journey is unique.  Gather what you can from listening to others that know what you are going through, learn from what they have to say and use that to take one more step forward.

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National Pain Report, My Story: A Pain in the Coccyx

Author:
Soula On National Pain Report
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html)

by Soula Mantalvanos

My pain began in 2007 when a fitness ball I was sitting on burst and I dropped onto a concrete floor. The pelvic pain that began then, I still have today: a gnawing, itching, toothache like, burning pain that causes weakness to my legs and leaves me unable to lift more than a couple of kilos or sit without constant pain.

Soula Mantalvanos

The pain worsens after any of this activity and seems to gather in a sensory flare throughout my lower spine when I go to bed. It’s unbearable.

I had many treatments, including the removal of a pelvic recto/vaginal septum. This restored my ability to at least shower barefoot and bury the hellish feeling of having my finger stuck in an electric socket whenever I hear a loud noise or am near vibrations.

But I only shed one layer of my great onion of pain. I had not been diagnosed yet and felt lost.

I had cortisone injections to my coccyx and sacroiliac joints, giving me three days of complete pain relief, which was labeled progress. I learned what’s meant by “diagnostic injections”. I also learned that I had neuropathic pain, not “mechanical” pain. My “mechanical” surgeon then referred me to a neurosurgeon.

I begged my neurosurgeon to do anything, even to chop my coccyx off. But after getting opinions from other surgeons, he suggested not to go the invasive path as we had the option for an implant called a peripheral stimulator, a treatment that was reversible. It made more sense. (more…)

My Peripheral Stimulation implant

Author:

I’ve had quite a few emails asking about my implant so I thought I’d create a more informative post. Given this device was a life changing treatment for me, I really haven’t given it its due attention. Implants are becoming more common for the treatment of pain, so it’s definitely worth getting my experience online.

I have to start with the pre implant status so you can all understand the impact the peripheral stimulation device had made for me (and I’ll call it my ‘stim’ if you don’t mind). I had just had diagnostic cortisone to my coccyx and had three wonderous days of complete relief. Hard to understand that’s even possible when a person can’t sit, stand, function without great levels of pain at every moment of the day.

I had presented to so many specialists (note the pages from my book, Art & Chronic Pain – A Self Portrait, of what my calendar looked like from 2007 -2009) and was labelled ‘the most severe case’ often. I had not been diagnosed as yet, I was lost, nowhere else to turn.

Self Portrait Book Calendar page ©SoulaMantalvanos The complete relief response I had from the cortisone shot to the coccyx was ‘progress’. Has your practitioner told you in investigating your PN treatments that you might learn ‘what you don’t have or don’t need’? This is what’s meant by ‘diagnostic’. You almost have to work backwards with PN, cross off ‘what isn’t the case” and in my case, I had learnt I didn’t have ‘mechanical’ pain, I had neuropathic pain. My ‘mechanical’ surgeon, Mr Roy Carey, then handed me over to Professor Peter Teddy, and I have much admiration, respect and thanks to express for that moment. (more…)

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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