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.

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.

September 30th, 2013 5:34 pm

Theo and I, live on The Scheme Project’s broadcast

By |2023-01-24T16:12:32+11:00September 30th, 2013|Categories: Workcover|Tags: , , , |

Doing my bit again for injured workers and hoping that sharing my story will bring positive change to the primitive Workers Compensation system in Australia. Both Theo and I attended today's live [...]

September 21st, 2013 12:59 pm

Soula’s PN Weather Update

By |2023-02-17T10:32:01+11:00September 21st, 2013|Categories: About, Blog, Pudendal Neuralgia, The pain|Tags: , , , , |

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.

June 10th, 2013 10:34 am

How do I know if I have PN or PNE?

By |2017-12-11T09:42:18+11:00June 10th, 2013|Categories: About, Help, Learn, Professional, Professional Resources, Pudendal Neuralgia|Tags: , , , , |

Before I get into PN versus PNE, I want to first give you a brief explanation of the physiology of the pudendal nerve and the diagnosis of PN. The pudendal nerve is a large nerve that arises from the S2, S3, and S4 nerve roots in the sacrum, and divides into three branches—the inferior rectal nerve, the perineal branch, and the dorsal clitoral/penile branch. The nerve travels a tortuous course through the pelvis to innervate: • the majority of the pelvic floor muscles, • the perineum, • the perianal area, • the distal third of the urethra • part of the anal canal • the skin of the vulva, the clitoris, portions of the labia in women, • and the penis and scrotum in men. The pudendal nerve travels a torturous course through the pelvis. Patients with PN can have tingling, stabbing, and/or shooting pain anywhere in the territory of the nerve. Symptoms include vulvar or penile pain, perineal pain, anal pain, clitoral pain, and pain at the ischial tuberosities as well as pain with bowel movements, urination, and orgasm.

May 31st, 2013 3:17 pm

The Scheme Project

By |2023-01-24T16:12:33+11:00May 31st, 2013|Categories: Advocacy, News, Workcover|Tags: , , , , , |

You can all imagine why The Scheme Project caught my attention and you can all understand why my pledge was not only made in seconds it was supported (and increased) by my husband Theo who equally saw the benefits in Kris's project. As frustrating as it is being left without any income and medical support after my workplace accident and having my fair share of rants to expose, I actually appreciated Kris's professional approach to his project and his intent to make the documentary up front but not personal. He's not looking for tantrums, witch hunts, singling out of fraudsters and unethical behaviour but rather aiming at exposing the realities in hope of making a change. At the end of our conversation we both agreed that life's great knowledge of 'health first' doesn't seem to be part of WorkCover's culture. The support just isn't there, not in treatment, not in standards, not financially and certainly not in return to work. What does Kris need? Your signatures and your pledge (pledges are not collected unless Kris reaches his target). 'You' may be an injured worker, family member of an injured worker or employer, a treating practitioner, medical examiner, conciliator, lawyer, investigator, WorkSafe agent staff member, Minister, anyone associated with the WorkCover system in fact any worker or employer, we all deserve better quality protection.

April 23rd, 2013 11:31 am

My ‘Fatty’ tail aint fat afterall!

By |2023-02-17T10:32:01+11:00April 23rd, 2013|Categories: About, Blog, My treatment|Tags: , , , , |

Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood. I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I'm hopeful again and thinking I was in some kind of a flare. I can't expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I've got to expect at some point the body is going to say, 'hang on love, you're lifting too much milk!'

December 31st, 2012 3:36 pm

Do I dare put it in writing…?

By |2017-12-15T15:53:55+11:00December 31st, 2012|Categories: About, Blog, Living, The pain|Tags: , , |

Happy... post nerve block No. 3. I'm at 5.3 weeks and have managed to walk daily a few days in a row, practice some extremely mild yoga and have a few meals out without the pathetic fire warning in my pelvis. Could it be? Could it really be? Here's hoping 2013 begins with some pain free magic. Right now, I feel like this... and I wish that everyone who comes across my website, or is a regular reader feels the same. If not, please, remain hopeful.

December 23rd, 2012 9:31 am

Building blocks… I hope!

By |2023-02-17T10:32:01+11:00December 23rd, 2012|Categories: About, Blog, My treatment|Tags: , , |

I’m not yet clear about the effects of Nerve block No. 3, but I’m calling it… I’m going to be positive… I believe I’m building! It’s just a sorta three steps forward and two back situation.. I hope. So far, my building blocks go like this: • Nerve block No. 1 (December 7, 2011), • Nerve block No. 2 (April 18, 2012), • Nerve block No. 3 (November 23, 2012)

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