My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.
Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.
(Excerpt from mamamia.com.au. Story by Caitlin Bishop)
Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.
“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia.
Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.
“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.
Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.
“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”
Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.
“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.
“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”
Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.
“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”
I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.
It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.
It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.
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 peripheral stimulation implant. PainAustralia who have become a great support for me and who recently interviewed me for this story; Social Media for Pain Education were contacted initially by A Current Affair asking if they could recommend anyone who had nerve pain and had found relief from a stimulation implant.
Admittedly a little weary of ACA’s style of filming and my preference to not impose my pain onto others, I still agreed realising I could reach many chronic pain sufferers and also give them courage if they were considering a stimulation device implant.
So, here I am, and tonight there I will be, on A Current Affair in all of chronic ‘neuro’ pain’s putrid reality and sharing the modern chronic back pain treatments that truly did save my life and now have me living again. I’m hoping they won’t cut out the emphasis I made about my Theo treatment, he truly is my largest form of pain relief.
And while I have this great opportunity to raise awareness relating to chronic pain, I’d like to add that in no way has my WorkSafe Insurer contributed to any of the costs for this life saving, $60,000 device. I’ll be forever grateful to my private health insurer who forked out a whopping $54,000 of the expense. All other medical costs relating to my injury including the $6,000 gap for the device (and any treatments over the last two years) have been seen as unrelated to my work injury by the WorkSafe Insurer. The implant in particular was not covered on account that my Neurosurgeon’s letter was seen as insufficient. Below is a copy of my surgeon’s letter to my WorkSafe Agent case manager (without personal names) and the snippets of correspondence relating to the matter (I have loads of paperwork but basically this sums up the support (not) from WorkCover: Continue Reading
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. Continue Reading
My current situation is a life setup based on my husband Theo’s help all day. I could not have returned to work without his help or the home/office setup we have. I’m still not driving and my weight limit goes from 0 – 3kg. I haven’t established a regular basic living routine (this includes a daily walk), still unreliable to myself!
Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen. As if there’d be ANY words for me to explain how I feel writing this post. So please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:
“I’M BACK AT WORK!!!!!!!”
No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!
And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).
It’s been 2,063 days since my ball went burst…
5 years, 7 months, 23 days (including today)
294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).
(Image: Now this is what I would call an anti-burst fitball!)
I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.
Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.
Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.
So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.
So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.
I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).
Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. Continue Reading
Block!!! 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… Continue Reading
It happened! We finally came face-to-face. Botticelli’s Birth of Venus and I stood less than a meter apart today in Florence’s Uffizi gallery.
I’ve racked my brain searching for the first time I saw Venus, and I reached back to the age of seven on a very exciting family trip to Cyprus where the country’s motto is, The Island of Venus, and uses the masterpiece freely, or should I say excessively. I’ll take a wild guess and say the majority of Cypriots have no idea of the painting’s actual roots, (and my dear mum counts as one of those people asking if Aphrodite had been taken to Italy when I called her today!).
I’ll take the Wiki def: …the scene was inspired by the text in a Homeric hymn published in Florence in 1488 by the Greek refugee Demetrios Chalcondyles:
Of august gold-wreathed and beautiful
Aphrodite I shall sing to whose domain
belong the battlements of all sea-loved
Cyprus where, blown by the moist breath
of Zephyros, she was carried over the
waves of the resounding sea on soft foam.
The gold-filleted Horae happily welcomed
her and clothed her with heavenly raiment.
What’s also revealed here is the origin of our Jack Russell’s name, Zephyr (who is actually more like a hurricane), but… back to my life moment, back to one of the big, completed circles of my life… I was moved completely. So moved I couldn’t move, stuck to the floorboards with only one way to go, closer, if only everyone else would get out of MY way!! I almost felt I had a special right after loving the piece for most of my life, painting her, drawing her over and over. I almost couldn’t understand why no one could see these facts, and why didn’t they all also know I was the one with the tattoo of Venus on my tail? I contained myself, I was in danger of setting off the alarm and for the life of me wasn’t about to live down to Theo’s expectations.
I had a disappointment, I think she needs a restoration, a clean. Or have I grown to love the reproductions, richer in color, brighter? Against the other Botticelli paintings she was the dullest, I think that’s strange and she has in fact been restored in 1987.
I only left the room because of pain, otherwise I’m sure I would have been there until closing time. Never mind, I’m an official amici degli Uffizi, friend of the Uffizi gallery, for the very purpose of being able to get in and out quickly and unlimitedly.
One more thing, because this was such a huge event I feel drawn to make a bit of a speech. Well not a speech but certainly state thanks and acknowledgement for the treatments, therapies, medication and associated practitioners that allowed me to get here. All those included, I still would not have fulfilled this dream, completed this circle if it weren’t for my life partner, my one and only Theo.
So where to now, what dream next… I think I’ll check the weather and see if there are any ‘twisters’ forecast… I need a lift to see the great Oz. No guesses what I’m going to ask for.
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.