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On Neurostimulation

2023-02-17T10:32:00+11:00March 23rd, 2021|About, My treatment|

Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:

Pain management is unique to all of us and the key to navigating the complex journey (I believe) is gathering as much information as possible. I hope this vimeo is of great help.
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My Peripheral Stimulation implant

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

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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It’s National Pain Week And I’m Celebrating by Writing the End of this Story

2023-07-24T10:35:43+10:00July 24th, 2023|Advocacy, Blog, Online|

Every year I think something amazing will happen during National Pain Week. But every year, nothing amazing ever does. We all wait for answers, but either the answers don't come, or they prove more tiresome. Worst of all, the answers are a direction to a lonely zone – the figure-it-out-yourself zone! So, figure it out myself; I will this year! I'm making National Pain Week AMAZING by writing the end of this story. 

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Soula’s Coconutty Granola

2023-02-25T10:46:28+11:00February 12th, 2023|Blog, Living|

I am skipping more breakfasts; my body manages far better (cutting out goat's feta on the seedy cracker). The less work my body does in the morning, the happier it seems. No pressure! An empty belly is no pressure on the gut. Feeling hungry does not cause pressure and is easier to deal with than the pain effects. I treat myself a couple of times a week to a croissant. On those days, I avoid carbs for the rest of that day. Carbs have to be in very little moderation for me. So finding a non-carb lunch is important, and it had to be easy to put together. Cereal! Well, most cereals have loads of carbs. Granola! A great idea; make a batch and just add fruit. But wait! Most granola mixes have heaps of sugar (and pepitas, which I am allergic to).

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And The Elephant in the Room is… Inflammation!

2023-02-17T10:32:00+11:00February 2nd, 2022|Blog, Help, Professional|

'Pain is a unique experience' we've all heard it, and by now, most of us believe it. But, after viewing my personal genetic report, I'm now sure that pain is a unique experience.  Perhaps it's not even pain for some of us. It's not for me! This genetics investigation exposed the elephant standing by my side the last 15 years – actually, it's been with me all my life but it took an accident to begin its stampede! Official diagnosis – not pain; it's inflammation.  And it always has been! 

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I Found My Pain Definition in Lockdown

2021-07-22T13:45:53+10:00July 21st, 2021|The pain|

Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.

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My Health Story now in your app store

MHS tablet

Pelvic Sense

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Soula Mantalvanos created pudendalnerve.com.au to advocate for people living with Pudendal Neuralgia and other invisible and chronic illnesses. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. The website includes topics about chronic pain, pelvic pain, pudendal neuralgia, injured workers, workers compensation, inflammation, chronic illness, patient empowerment, self efficacy, better healthcare, nerve pain, various treatments such as nerve blocks, neurostimulation implants and the courage that is required for self management. All information on this website is a account of Soula's lived experience and should not be taken in anyway as advice or recommended treatment for any other person or healthcare professional. Chronic illness is a unique experience and therefore requires better understanding and tailored care. © Copyright 2023 -    |   pudendalnerve.com.au created by ooi   |
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