About Soula Mantalvanos

“I felt I had lost my independence, I could not communicate and express my personal experience and that no one understood me.” Soula combines her many years of chronic pain with her professional design experience to advocate about misdiagnosis and injured Victorian workers. Soula founded pudendalnerve.com.au and PainTrain My Health Summary to help raise the quality of care for those enduring and treating chronic pain.
March 30th, 2014 3:05 pm

My Peripheral Stimulation implant

By |2023-02-17T10:32:01+11:00March 30th, 2014|Categories: About, My treatment|Tags: , , , , |

I begged Professor Teddy to do anything, even to chop my coccyx off but he (and his backed up opinions) suggested not to go the invasive path just yet (removal of the coccyx had also not been very successful in treating chronic pain), we had an option for an implant, a treatment that was reversible, it made more sense. To 'qualify' for a stim you have to go through a trial first. The trial period was two weeks and in that time I had half of two leads placed inside my body (yes this is a full anesthetic/operation), with the remaining half of the leads hanging outside my body connecting to a temporary unit. It's a risky period, one very highly susceptible to infection but it allowed me to test the device and its impact before we implanted the $60k (or so) unit. Am I grateful I had private insurance? You bet! My WorkCover insurer certainly wasn't going to pay, eventually dismissing the surgeons reports as not having providing enough information.

March 22nd, 2014 2:20 pm

Dear WorkSafe Victoria

By |2023-01-24T16:12:31+11:00March 22nd, 2014|Categories: Workcover|Tags: , , , |

Dear WorkSafe Victoria, We have been acquainted now for over seven years, and to commemorate this occasion the least I could do was to pen you a few heart-felt words. Today I came across WorkSafe's Clinical Framework For the Delivery of Health Services and I would like you to know that it made so much sense to me from my perspective as an injured worker. I was very impressed reading through it. It ticked all the boxes and its approach (Purpose) was exactly what I had hoped to experience in my own chronic pain journey under your watchful eye. The guiding principles caught my attention:

March 17th, 2014 11:03 am

Will I live to regret it?

By |2023-01-24T16:13:29+11:00March 17th, 2014|Categories: Workcover|Tags: , , , |

I declared I had a capacity in 2013 after being indefinitely written off for life by the Medical Panels (a Federal decision) in 2009. In what should be a most positive experience I have not received one cent from my WorkSafe Agent since January 2013 when I first declared I was attempting 9 hours a week. It's so difficult for me to work, I'm completely reliant on Theo but my moral ethics will not let me rest, never-failing to notifying me daily that I am able to contribute to our business and in doing so and remaining honest, this will bring a positive outcome. I've had no one within the system guide me or offer help during this process. The system's drive seems purely for the WorkSafe Agent to make any process as difficult and stressful for the injured worker so that they give up their rightful compensation or worse still, change their ethics making them so fearful that they never attempt work again. I have never, in the whole 7 years of being exposed to this system, felt I could trust anyone, felt supported, given hope, treated with respect. I have not felt any kind of care but rather I'm left to feel and be treated guilty of my crime - a workplace accident. I won't accept this treatment, I won't accept this poor income protection WorkSafe calls 'quality income protection', and it's lucky for me I have help to battle and savings to live off (which are rapidly diminishing mind you). Not being intimidated, fearful, or swallowed up by this system and its primitive ways is the reason I found my diagnosis and got myself back to work! It's the reason why a Medical Panels, for the first time, has acknowledged someone with Pudendal Neuralgia (even though they can't verify it!!), and it's the reason why, I'll get my entitlements too!...

February 20th, 2014 8:27 pm

The Medical Panels assessment of my work capacity 2014

By |2023-01-24T16:12:31+11:00February 20th, 2014|Categories: Workcover|Tags: , , , |

I know many of you have been waiting for this post. I have been waiting to post it myself but one guess what was in my way? A response from my WorkSafe Agent... and I'm still waiting for it! I received my Medical Panels opinion and they agreed with the capacity I had presented. I was honestly stunned. My opinion read: Question 1. Whether the worker has a current work capacity and, because of the injury, is, and is likely to continue indefinitely to be incapable of undertaking - (ii) further or additional employment or work ; or (ii) further or additional employment or work that would increase the worker's current weekly earnings and, Answer: (i) yes (ii) yes Question 2. If not so incapable, what further or additional employment or work the worker capable of undertaking? Answer: Not Applicable Further to, the report that followed bewildered me, tears streamed down my face. I actually didn't want Theo to read it to me, I was too fearful I'd read another limiting opinion, like the previous one that has me bound to a 'Chronic Pain Disorder' that no one understands. Or, worse still, it was going to be like the Impairment Assessment where the Neurosurgeon on that panel wished me 'a miracle' on the way out whilst contributing to the decision of: '0% whole person impairment... The degree of impairment is permanent'. Theo began... he read mostly accurate details that I had voiced to the Medical Panel, I couldn't believe what I was hearing.

February 15th, 2014 9:21 am

Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

By |2022-05-17T10:33:44+10:00February 15th, 2014|Categories: Advocacy, Events|Tags: , , , |

HTML tutorial I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners. Was I terrified? Absolutely! But as if chronic pain hasn't trained me for that, pushing me past all my boundaries and limits, and facing constant fears... this was going to be a piece of cake in comparison! The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art, Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo's help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support for both Theo and I was 100%. I was asked to present my story as honest as possible and in my own words and pictures.

January 27th, 2014 10:38 pm

Back to yoga, thanks to Dustienne Miller’s, Your Pace Yoga

By |2023-02-17T10:32:01+11:00January 27th, 2014|Categories: Help, Learn, Professional, Professional Resources|Tags: , , , |

This is truly a thrilling post for me to finally be writing. I used to practise yoga 4 mornings a week for at least 45 minutes pre injury. After my warm up poses, my spine unravelling was eight minutes in shoulder stand, followed by another eight minutes in plough pose before Savasana (rest). So you can imagine how many times I've tried to get back to my yoga since knowing the benefits. i was always unsuccessful until I came across Dustienne's Your Pace Yoga dvd. I still can't work out what's different, of course I've made progress but that can't be the answer as it wasn't so long ago I attempted cat/cow pose only to begin flaring. I'd say Dustienne's sequence and breathing is definitely focused on opening, lengthening and creating space in the pelvis, it just feels great and I'm happy to report I've managed it once a week for over a month now. I know that's not huge, but I'm blowing my trumpets that I could sustain one of the routines. I hope to get to both but my struggle lying on my back may prevent me.

January 4th, 2014 9:31 am

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

By |2021-02-24T10:32:28+11:00January 4th, 2014|Categories: Advocacy, Creativity|Tags: , , , |

In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath. Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years. These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.

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