May 2nd, 2015 2:45 pm

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

By |2017-12-17T12:37:26+11:00May 2nd, 2015|Categories: Learn, My Health Story, Professional Resources|Tags: , , |

Here are some of the important messages that we hope you have taken on board: Your brain can be a powerful tool to help you manage your pain experience. Like all of our life experiences, that of being in pain can be changed. You are not to blame for your persistent pain. You can experience pain without evidence of tissue damage and not experience pain when tissue damage has occurred. Drugs (or needles) alone are not the answer. The “third space” engagement gives you the best possible opportunity to better manage your pain. Consider embracing the whope model of care. Could this be your slogan? Know pain, know thyself!

October 30th, 2014 9:59 am

My interview with the Australian Pain Society

By |2017-12-11T14:10:27+11:00October 30th, 2014|Categories: Advocacy, Online|Tags: , , , |

APS: How important are support groups for both you and your close family/community? Soula: I can’t say I feel there is much support for my husband and family/community. It’s difficult with invisible pain, it’s a similar scenario with depression, we still don’t get it. Society seems to have been given an immense right to provide their opinion (e.g. with social media platforms) and this has opened up some kind of authority to encourage opinions and much judgment. Not many tread carefully or really think from someone else’s perspective. Although we have more information accessible to us, we seem to be learning less.

October 7th, 2014 10:42 am

ANZCA Bulletin: Simple Accident Leads to Life of Pain

By |2017-12-11T15:03:47+11:00October 7th, 2014|Categories: Advocacy, Print|Tags: , , |

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. “It is still a primitive time in pain. Being told for four and a half years ‘this is chronic pain ... go home and live with it, there’s nothing that can be done’ is brutal not to mention primitive.”

September 21st, 2014 9:08 pm

Commitment, sacrifice and granting myself the right permissions

By |2023-01-26T14:46:01+11:00September 21st, 2014|Categories: About, Blog, Living, My treatment|Tags: , , , |

Last week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that: I am therapist free Did I ever think this day would come? Of course I did and I believe that's why I am here. I have had my moments, but what I didn't realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail's shell weight, I began to make progress.

August 9th, 2014 8:46 am

Cathartic collage, my self portraits

By |2024-01-21T15:26:16+11:00August 9th, 2014|Categories: About, Blog, Creativity|Tags: , |

Collage has been a little more therapeutic for me than my usual art forms. I think it must have been finding a technique that I could manage and one that didn't add to the fatigue and pain. Cutting small pieces of paper and glueing, drawing, attaching was just so light and easy. The painting of small pieces of paper and the careful ripping and tearing was like rocking. So gentle, so calming and at the same time feeling like I was handling my pain, expressing it and getting it out of my body and onto the art piece.

April 15th, 2014 9:21 am

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

By |2021-02-20T11:17:13+11:00April 15th, 2014|Categories: About, Advocacy, Blog, My treatment, Online|Tags: , , , , , |

(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.

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.

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