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National campaign: nerve pain is different

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New research reveals nerve pain affects the productivity and wellbeing of Australians


New research¹ shows six out of ten (59%) Australians who report living with neuropathic (nerve) pain are missing work at least once a week due to their nerve pain. Intriguingly, this is higher than those living with other chronic pain conditions such as osteoarthritis and rheumatoid arthritis (where 43% miss work at least once a week).

Pain Medicine Specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, explains how nerve pain is different to other forms of pain:

“Nerve pain affects many Australians. It is often described as being more severe than other pain and lasts longer than would be expected. Nerve pain feels different and is sometimes described as burning, stabbing, pins and needles, or the feeling of electric shocks. It can be associated with numbness or increased skin sensitivity.”

Celebrity chef Ben O’Donoghue shares his story of living with nerve pain as he becomes the ambassador of a new health awareness campaign called Share Your Pain, which launches today to coincide with the beginning of the Global Year Against Neuropathic Pain².

“Share Your Pain aims to increase understanding that nerve pain feels different,” Ben said. Continue Reading

My interview with the Australian Pain Society

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APS Pain Recovery JourneyA pain recovery journey shared

(Excerpt from Australian Pain Society’s blog. Read the full interview here)

We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.

APS: Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

  • Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
  • That led, shortly after, to my diagnosis which has been the key to my recovery.

APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

  1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
  2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
  3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

Continue Reading

‘The Hurting Strings’ wins International Film Festival Reel Health Award 2014

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Jacinta Cashen, Peter Lamont, Reel health Award 2014Congratulations to Peter Lamont and Jacinta Cashen, who last night, won the ‘ReelHealth’ International Film Festival Award hosted by Monash Health for our documentary, The Hurting Strings – An Artist’s Story of Pain.

The film category entries were: Get Well Soon, The Journey, Your Voice, Behind The Scenes, and Mental Health and The Hurting Strings won The Journey category.

‘This category is a personal account through the journey of health. It may be a patient’s experience, or a doctor trying to implement a new technique in a hospital. It may be the career pathway of a nurse from novice to expert or the evolution of health issue in modern society.’

I must sound like a broken record by now, but once again, I am left bewildered by my chronic pain journey and the contrasting experiences that go from excruciating pain to exhilaration. Above all, I feel incredibly privileged at the opportunities presented to me and so happy to be able to help others by communicating my story. I could not have done this without Theo, my family and of course Peter Lamont and Jacinta Cashen. Continue Reading

Semi Finalist for the Doug Moran National Portrait Prize 2014

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Ms Soula With TheoAlmost 150 works were selected from nearly 1,000 entries.

2014 judges were, Edmund Capon AM OBE, and Lewis Miller, Australian Artist. Both viewed all entries and made their selection of semi finalists.

Very chuffed to be selected as a semi finalist regardless of the outcome. The portrait was flown up to Sydney for a second round of judging. She didn’t make the final cut of 30 finalists but I feel so content that Ms Soula is going to great lengths to create awareness for invisible pain. Continue Reading

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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(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. Continue Reading

My Documentary: The Hurting Strings – An Artist’s Story on Pain

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View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings

Let’s watch The Hurting Strings

I’d like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with such perfection even after realising what was going to be a four-minute documentary was turning into something much longer.

And to all of you who either contributed through crowd funding, or supported me throughout this process by giving me great courage to see this difficult task through, THANK YOU. Your support is now spreading awareness for chronic pain around the world.

Director’s Notes

Of the very many things that set humans apart from all else, certainly the most beautiful is our ability to express our lives creatively. If emotions were viscous, then life is the palette for the artist to dip their brush. I can’t count the times an artist has said to me “I need to paint just as I need to breathe”; so what happens when that ability to express is cut short?

The Hurting Strings title occurred to me after thinking about the things Soula created as an expression of her accident and the devastating effects the resulting incapacity had on herself and her family.  Odd yet perfectly fitting in one, the idea of a Marionette dubbed Ms. Soula delivered the title. The metaphor makes it patently clear that the strings that guide our lives are not really ours to articulate and in Soula’s case, they are indeed the hurting strings.

I visited Soula about doing a film on an artist, but as we spoke this other undercurrent kept tugging and pulling and it made me uneasy. It made me uncomfortable enough to change focus and step out of my own comfort zone and in that I found I was in good and plentiful company.

Telling the “I hurt myself and it changed my life” story would, on the surface be difficult to avoid the mundane – after all, people have accidents all the time. The path Soula found to deal with it is anything but ordinary. As her sister Koula says “She found the tools she needed” and in the same way a river finds its way to the sea, the story unfolded as a voyage of discovery and relentless creativity. “No-one will do it for you” is as much a call to action as it is a statement of abject reality.

The film then is one of humanity and being human, the inhumanity of a system designed to avoid yet marketed as help. How selfishness the selflessness are actually one, how the inability to deal with the things we can’t see isn’t through lack of want, it’s through lack of definition.

These are interesting stories. Stories worth telling, certainly stories worth reflection.

I’ve been nominated for a WorkSafe Award

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VWAAwardWebsiteHeaderI’ve met some incredible people who have become my dear friends and my greatest supports during my pain journey. One of whom I often rave about is the wonderful John Quintner, Consultant Physician in Rheumatology and Pain Medicine. You’ve seen him battle beside me publicly on social media. Not only helping me with my comprehension and study of chronic pain, John has also helped me through the tangled forest of Workers Compensation. He now advocates to expose the many pitfalls for injured workers in the various Australian Worker’s Compensation systems.

In supporting my unequal struggle with the Victorian Workcover Authority (VWA) he has witnessed what it takes to survive being in the system. As if his support isn’t enough, he now honours me by nominating me for a VWA Heath and Safety Award.

Soula, with your permission I have just nominated you for a Victorian WorkCover Authority Award in recognition of your long and arduous struggle against all odds to return to work. Whether or not the nomination is successful, I want you to know that in my opinion and in that of the other referees, Professor Stephen Gibson & Rosemary McKenzie-Ferguson, you are most deserving of such recognition. In addition to your return to work, you have performed an important role in pain education as an advocate for sufferers of this distressing condition (pudendal neuralgia). Your ability to smile and to be creative in the face of adversity has been an inspiration to many pain sufferers around the world. I wish you the best of luck!

Basically, it’s about this:

Worker Return to Work Achievement. Tell us their story!
This category recognises a worker’s outstanding achievements in returning to work following a workplace injury.

Nominating a person, group or initiative is easy! All you need to do is tell us the nominee’s achievements by following the prompt questions – tell us what the person/business/group did, why they did it, and how it had a positive impact on their workplace.

I don’t mean to be pessimistic, but after experiencing the VWA culture for 7 years now, I’m pretty sure the nomination will be rejected for some paltry reason/s based on my pending application for part payments of compensation. It’s been over a year since I submitted that application, so they are obviously struggling to come to terms with the fact that I attempted a return to work. Accepting a nomination for someone they have not been supporting in their return to work would be hard to imagine. But I live in the hope that has sustained me so far – that of a successful outcome.

(Update July 22, 2014. Nomination accepted)

Nomination as submitted by John Quintner and supported by Professor Stephen Gibson and Rosemary McKenzie Ferguson:

Soula and her husband Theo run their own business in art and graphic design, providing creative solutions to their clients. Her injury has had a major impact upon their lives together, as well as upon their business. She has consulted many health professionals and has been given a large variety of opinions, investigations and treatment procedures.
Describe your job prior to your injury.

Prior to her injury she and her husband ran a highly successful business. Soula was also a prolific artist in her own right. She was very energetic and a great support to her family and friends.
How were you injured and what was your injury?

Soula fell onto her sacrum when a fit ball upon which she was seated burst. Her injury was extremely difficult to diagnose but after some considerable time her pelvic pain was ascribed to an injury to her pudendal nerve – pudendal neuralgia. The insertion of a pelvic nerve stimulator was a turning point in her rehabilitation. She is still quite disabled and requires regular medication for pain relief.
Describe the job they do now (including employer if different).

For the past 12 months Soula has been attempting a gradual return to work within her physical capacity and has reached 9 hours per week. She has had to overcome many physical difficulties in terms of her home and work environments. Soula is still engaged in art and design work. Since her injury she has taken on an important advocacy role for people suffering from pudendal neuralgia.
What were the hardest and best things about returning to work?

The hardest thing was the lack of support from her WorkCover-appointed Agent, who placed many obstacles in her path and has refused to pay her any compensation for the past 12 months. Soula has been examined by two medical assessment panels and has found the Conciliation process to be unhelpful. The Ombudsman has been approached for assistance. The best things have been her ability to retain a sense of humour, to remain creative and positive in the face of adversity and to provide inspiration to many pain sufferers around the world.
What do you think helped you most to return to work and get your life back?

The support of her husband and family, as well as her many friends in the art world and in the world of pain management. Last year, with the support of a pharmaceutical company and members of the Australian Pain Society, Soula addressed a meeting in Sydney of over 160 pain specialists. The text of her address to this meeting is posted on her website. She has also taken part in an advertisement to raise research funds for the Faculty of Pain Medicine, Australian and New Zealand College of Anaesthetists. Soula has become an advocate for sufferers of pelvic pain conditions.
What advice would you give other injured workers?

The many injured workers and fellow pain sufferers who follow her web-log have benefited from reading about her quite varied experiences whilst in the WorkCover system. She found the system to be decidedly unfriendly to women with undiagnosed persistent pain but she has counselled them not to lose hope. For those who are faced with her situation, her advice to other injured workers is not to declare a work capacity,

View my nomination at www.healthandsafetyawards.vwa.vic.gov.au/browse-entries/entries/the-hurting-strings

 

Stepping into an ANZCA ad to help raise awareness for chronic pain

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Soula and Marika Silwedel at ANZCA ad filming

(Update: July 18, 2014)
Yep, I’m one in five…

Watch the full ad at: www.anzca.edu.au/fellows/foundationSoula In Anzca Ad

(June 14, 2014)

Chronic pain insists on presenting me with the unexpected.

Today, I found myself on the Kerferd Road Pier in Port Melbourne, participating in the making of an advertisement that the Australian and New Zealand College of Anaesthetists (ANZCA) are making to raise awareness and funds for chronic pain. How could I say, ‘no’? Actually, I’m ashamed to say, I nearly did say ‘no’, but I quickly motivated myself by thinking of the star of this commercial who is a 5-year-old boy with arthritis.

The amazing team for Sceneon handled the filming, and from what I gathered today, the concept of chronic pain is going to be well documented and represented. Don’t want to give away too much, just a few behind the scenes shots. You’ll only have to wait a month to see the outcome. Subscribe to the site if you’re aren’t already to receive the newsletter or post update.

To add to the ‘unexpected’ adventures of chronic pain, I finally met Marika Silwedel whom also featured on A Current Affair’s (ACA’s) Nerve Pain story the same night I was. Who would have thought two people would eventually met via a pain story and ACA!? Continue Reading

Texan Physiotherapist, Sara Sauder interviews me about PN

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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.

Continue Reading

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

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Soula On National Pain Report

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. Continue Reading

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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