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Soula Mantavanos…Inside her home and her passion to help others!

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ShowAndTellHeader
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!

Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.

Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN).  Soula is now advocating and working tirelessly to help others through her website.

We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!

Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain?

 

“I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37.
Continue Reading

Doug Moran National Portrait Prize Semi Finalist

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Communicating pain…

Self Portrait, Art and Chronic PainAbsolutely gobsmacked at this achievement, and incredibly confused at the same time. Who would have thought a horrifying life changing event could bring so much reward. Nevertheless, I’m going with it and am stoked to be considered for semi finalist. Self Portrait (art and chronic pain) will be heading up to Sydney next week for the next round confirming finalists for the National prize.

View all the semi finalists here, read more about the prize here and view the 2012 finalists here.

About the portrait

A self portrait of a self portrait. A marionette is the only way I thought to express my living with chronic pain. I lost my independence and yet the debilitating qualities couldn’t be seen on my exterior. No one could grasp my torment by looking at me, in fact I looked ‘well’. I lost my control in life and the pain directed my days for many years… for some days it still does.

This painting of me as a marionette, I believe, is a fitting self portrait of me, perhaps even for anyone else with any kind of invisible pain.

Currently this is how I see myself but I remain hopeful that this image will change one day.

Follow the pain story: facebook, rss, twitter.

On A Current Affair tonight!

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A Current Affair

A Current Affair Continuing on with my awareness for Pudendal Neuralgia and all things pelvic pain, I didn’t pass up the request from A Current Affair to speak about nerve pain and my experience with it and its treatment, predominately focusing on the peripheral stimulation implant. PainAustralia who have become a great support for me and who recently interviewed me for this story; Social Media for Pain Education were contacted initially by A Current Affair asking if they could recommend anyone who had nerve pain and had found relief from a stimulation implant.

Admittedly a little weary of ACA’s style of filming and my preference to not impose my pain onto others, I still agreed realising I could reach many chronic pain sufferers and also give them courage if they were considering a stimulation device implant.

So, here I am, and tonight there I will be, on A Current Affair in all of chronic ‘neuro’ pain’s putrid reality and sharing the modern chronic back pain treatments that truly did save my life and now have me living again. I’m hoping they won’t cut out the emphasis I made about my Theo treatment, he truly is my largest form of pain relief.

And while I have this great opportunity to raise awareness relating to chronic pain, I’d like to add that in no way has my WorkSafe Insurer contributed to any of the costs for this life saving, $60,000 device. I’ll be forever grateful to my private health insurer who forked out a whopping $54,000 of the expense. All other medical costs relating to my injury including the $6,000 gap for the device (and any treatments over the last two years) have been seen as unrelated to my work injury by the WorkSafe Insurer. The implant in particular was not covered on account that my Neurosurgeon’s letter was seen as insufficient. Below is a copy of my surgeon’s letter to my WorkSafe Agent case manager (without personal names) and the snippets of correspondence relating to the matter (I have loads of paperwork but basically this sums up the support (not) from WorkCover: Continue Reading

Happy to be stars of The Scheme Project

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Soula Theo On Scheme Project

Soula Theo On Scheme ProjectMy rants are plenty in regard to the WorkCover system and my efforts to express the limitations and lack of support I’ve experienced as an injured worker for almost 7 years have been endless. All efforts have led to the usual dead-end letter from a WorkSafe Agent, Government body, WorkSafe themselves, if not the dead silence and ignorance that’s on offer for most workers’ concerns.

I was ecstatic when I heard about Kris Vanston and The Scheme Project. and I offered to jump on board and help in any way I could. Theo and I have signed the petition and have both made our pledges. Recently we took our support one step further and spoke up in front of the cameras for The Scheme Project’s Pozible campaign promo. Continue Reading

Social Media for Pain Education, Pain Australia

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Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” Continue Reading

Sami Vanston, Only All My Love

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Sami Vanston In Studio

Singer/Songwriter Sami Vanston spent the day in the studio as The Scheme Project brainstormed ideas for their documentary soundtrack. This song was written in dedication for a victim of bullying who took her own life because of the pressures of the WorkSafe system.

I’m so touched by this and also hopeful that the WorkCover system will no longer be able to sweep injured worker’s voices under the carpet. Social media has given us a voice… and it’s a very strong one.

Please visit The Scheme Project and follow the prompts to the petition if you want this system to change.

Desktop mag: Creative Practice & Pain Management

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(Article from Desktop Magazine’s feature article: Creative Practice and Pain Management)
Written by Soula Mantalvanos

Origin of Image is a multidisciplinary design studio based in Collingwood that is managed by professional and personal partners, Soula and Theo Mantalvanos. Soula has a rare condition called ‘Pudendal Neuralgia’ which on some days can be completely debilitating. Here she shares some insights into her daily routine, and offers some advice for practitioners dealing with similar predicaments. Continue Reading

The Design Files

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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. Continue Reading

My_Space, My facade, living with Pudendal Neuralgia

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Sunday Style My SpaceWe don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN). 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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