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I'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 [...]
Prologue: This is not really a comedy but without a sense of humour and the odd injection of sarcasm this injured worker would explode from the frustration and disappointment that being in this system has created. I am heading back to conciliation on May 13 to battle for part-payments of compensation since declaring in December 2012 that I have a limited capacity for part-time work. I am also disputing my WorkSafe authorized Agent’s refusal to pay any of my medical expenses over the last 2-3 years. Acts 1 and 2 can now be written but Act 3 will have to await the outcome of the conciliation conference. But as you will see, the outcome could well provide the comic highlight of the performance. You in the audience may laugh, clap or cry as you read my sad little play.
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html) The National Pain Report, my story. April 14th, 2014 by Soula Mantalvanos 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.
(Sing with me, to the tune of 'The 12 Days of Christmas'': 16 points of stimulation, multiple case managers, too many Independent* Medical Examinations, 9 anaesthetics, Several investigations, wasted complaints to WorkSafe, Four conciliation applications, Three operations, Two Medical Panel Opinions, One Impairment Assessment, and, no Partridge in a Pear Tree to be found...
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.
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.
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. I think what tipped me into advocacy was the 4.5 years it took to find a diagnosis and the near miss I had with living out the rest of my life in horrific pain levels if I’d not investigated further. My chronic pelvic pain is more specifically known as Pudendal Neuralgia (PN) or Pudendal Nerve Entrapment (PNE). This is more simply put as Carpal Tunnel in the pelvis. Where Carpal Tunnel affects the hand signals and hand movements, Pudendal Neuralgia affects our biggest pelvic nerve which controls toilet and sexual signals and functions. The pudendal nerve runs under pelvic ligaments and muscles and is attached to nerve roots in the lumbosacral spine so it can be disabling. It feels like that core part of my body has a toothache or as if I have my finger stuck in a powerpoint. BUT, I’m happy to say I’m in a much better place now and that’s why I want to share my story. I believe if I was diagnosed within 6 months of my injury, I would not have this issue now and that makes me want to reach everyone with undiagnosed pain that may be suffering from PN. I’ve also been drawn to advocacy for injured workers since I’ve now had first hand experience with the WorkCover system and its limitations for understanding, assessing and treating chronic pain. In fact my chronic pain issue was not assessable for compensation. Its score was rated at 0% impairment. I’ve also submitted many complaints and questions to WorkSafe and associated organisations, I’m making a heap of noise on social media and gathering a great group of people in the hope of making a change. A network exists now, encouraging other injured workers to speak up, forming communities for support where there were none previously. Injured workers can now vent, speak up, be heard. Social media has provided a voice and is our legs (even when we physically can’t move). So in the process of advocating for PN/PNE the biggest tasks are to change the judgment and misunderstanding of ‘pain’, and misconceptions of the term ‘injured worker’.”
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 [...]
It's been a while since I posted a personal update but it's probably accurate to say that PN's weather patterns need to be documented seasonally. I mostly have turbulence, like it's sunny one day/stormy the next, or otherwise described as I take two steps forward and about 1.9 steps back. It's incredibly frustrating. So rather than report all the fluctuating details in between, it's best to leave some months go by to really figure out the progress. So now, the months have gone by and I can deliver to you, Soula's PN weather update for September 21, 2013.
I've lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures: 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks. Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr's names I had found, I got calls from both Dr’s the same day.
