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The Hurting Strings, my crowd funding campaign

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Campaign message

Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

The latest pain definitions from Prof Lorimer Moseley

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Lorimer Moseley Presentations-03Lrg

Getting a grip on pain and the brain – Professor Lorimer Moseley – Successful Ageing Seminar 2013

Always great to hear the latest definitions and discoveries regarding pain from THE pain Professor, Lorimer Moseley.

It still stumps me however, to hear how ‘intelligent’ the brain is but yet how stupid its ‘brilliance’ is of learning pain tunes. In fact I’m not sure I’m stumped, I’d rather call it disbelief that all this horrific pain I’ve endured the past 6.5 years can be a tune… a learned behaviour. I certainly don’t dismiss the research and of course we’ll all be examples of different definitions of pain but in my tail’s tip, I believe my undiagnosed and unrecognised injury to my pudendal nerve injury, and the lack of treatment, has created a great wound that if not scarred will need its time to heal.

Yes, I pace up my activity (or is it better put that I juggle it well), but now that I am having appropriate treatment, I’m going to hold the thought that I may be nursing my wound towards healing. I am happy however, to let anyone who swears by ‘pain tunes’ to believe that I’m also slowly changing my brain’s pain signal and that the process is more about plasticity.

Whatever floats your boat I say, so long as it leads to cure.

Watch Lorimer’s presentation: (more…)

Struck to the pelvis

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I wasn’t going to say anything about my experience with the intense thunderstorms we had in Melbourne a couple of weeks ago, but the more I think about it the more I think I should share. Given I used to get feelings of ‘surges through my spine’ from loud noises, frightening sounds (yes, even in movies!), from vibrations, from singing, etc etc prior to my implant and latest nerve blocks, I realise this might be an informative experience to share.

What happened?

I was walking to my studio from where I had a clear view to the sky through our balcony doors when the largest strike and thunder occurred (more…)

Over to Ms Soula

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Ms Soula by MarijaIvkovic

I remember the very moment my new project completed the mind development stage and entered the reality realm. It had me jump up in my aeroplane seat; and I could almost reach out and touch it… I mean her.

Most of you know, I have a love for character. Recently, I had also been influenced by our trip to Italy and all the Pinocchios and beautiful Venetian masks. Add to this the time I’d been desperately waiting for, the time when the pain would subside and allow for a new phase of life to begin, and my project formula was taking shape – finally! Happiness, character and a big story to tell. (more…)

Challenge the Uncomfortable Silence

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Read Sandy Hilton’s full article here: www.bodyinmind.org/persistent-pelvic-pain/

Every patient you see is likely to have a pelvis.  Roughly 1/4 of women will have had some pelvic pain in the course of sport, childbirth, sex or urinating.  Men are harder to pin down for exact numbers as it gets poorly diagnosed along with back pain and prostate problems but they have pelvic pain as well.  Jane Bowering did a great job pointing out the need for health professionals to ask the difficult questions and screen for pelvic pain in her write-up following the NOI2012 extravaganza found here: Pelvic Pain: all the fun stuff. (more…)

To block or not to block…

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Healing at Boboli Gardens (Porcelain Museum) FlorenceBlock!!! Absolutely, completely, totally but only if you know where…

I have to stress this post completely relates to my condition and my personal issue with Pudendal Neuralgia. I also have to state that while I document my treatments and their effects it is difficult to know whether the effects will last. That also explains why my post is written so much later than my first nerve block (Dec 2011) and will end with ‘stay tuned’.

December 7, 2011

If you’ve been following my story then you’ll know by 2011, four years post accident, I had discovered, what I’m quite sure is, the second main culprit of my injury (the first being a nasty pelvic ligament), the Pudendal Nerve. A sequence of events found me in Dr Peter Courtney’s hands who suggested we block this nerve (bilaterally) and also inject both Sacro-Illiac (SI) joints with some cortisone as they were quite bulgy, especially on the opposite side of my injury (overworked poor darling!).

Nerve blocks affect us differently but the trickiest part about the Pudendal Nerve block is that it is quite painful and ideally requires a full anaesthetic which means the blocks must be a minimum of 12 weeks apart. So if my nerve block didn’t give me relief it either meant we missed the spot (hardly unlikely in my case) or that this treatment wasn’t going to work for me. I didn’t get 12 weeks of complete relief but certainly it reduced my pain and I had many moments of total relief and some random full days too. As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly.

The main aims for a nerve block are pain relief, diagnosis and obviously a cure. Cure happens, research tells us, if the block gives long-term relief and the nerve relearns how to behave during that time (or as I prefer to believe finally gets its sedative, has a long rest and recovers).

I feel quite lucky to be tuned in to my body and able to explain how I’m feeling and what pain I have and where. During this first block I noticed the rectal branch of the nerve was not affected so sitting back, completely on my behind with my back to a chair (not supporting my upper body on a table or my hands) would trigger the pain immediately. I’d feel a heat begin, a zinging then eventually I’d have the flare up. I explained this detail to Dr Courtney and it gave us a huge lead for my second nerve block… (more…)

Flare up

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Flare Up Process

Talk about getting the life sucked out of me! And the long-awaited, grand finale, official last symptom of my flare up is waking up and feeling I’ve had a bulldozer go over me… a few times… at least! My muscles ache all over, I could almost fool myself and pretend I’ve run a marathon, but in reality I’ve been in the dark cave of pain for days, sleeping and resting… and sleeping and resting. Oh yes but getting up long enough to cancel any commitments, or in the final day, getting up and attempting a coffee outing, only to realise that nope, flare up wants a bit more of your life.

I have nothing nice to say about a flare up. It’s nothing but my injury’s hissy fit and a brutal check point that tells me I’m not my old self yet. But since I like to keep a positive outlook and focus on the good things, I will say that coming out of a flare up feels incredible. I feel I could fly, my brain gears up again: ‘Of course I’m going to beat this’, ‘yes, I’ll be me again one day’, ‘I’ll get back to work for sure’, ‘I’m going to start a painting tomorrow’, ‘I’m going to sit on a hard bench tomorrow’, ‘movies – bring ’em on!’ and, ‘darling, let me drive today’...

Neuro Orthopaedic Institute (NOI)

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So… what is NOI?

Neuro Orthopaedic Institute (NOI) Australasia has been in operation for 20 years, with highly qualified instructors working on all continents with multidisciplinary audiences. Organising over 100 seminars a year throughout the world, NOI’s faculty members are active in many conferences, university programmes and other postgraduate education sessions. The company reinvests in education and clinically based research and Noigroup Publications has grown from the demand for resources to support this emerging research.

The essence of NOI

Our vision is to seed ‘healthy notions of self through neuroscience knowledge’ worldwide. Read on…

noigroup.com
facebook.com/noigroup

twitter.com/noigroup

Facebook

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Since my accident many things, like facebook, have taken on a new meaning. It’s a great way to socialise (actually, let me be honest, its a great distraction) especially if you can’t get out easily. And the best thing is you can choose to participate as much or as little as you are able to. (more…)

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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