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My treatment

How can you know? There might be better treatment out there!

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I was sure. So positively sure.

I was miles better, my life was saved, I was no longer existing, I was living again.

I was sure that I was the best I could possibly be and that I’d received the best possible treatment for my type of pelvic pain.

But now, after a very successful sacral stim trial (of which I’m best writing more about later), I am left to wonder why I made up my mind and what it was that convinced me I was ‘doing great’ and reached the ‘best treatment‘.

I wasn’t, I hadn’t.

I know that living with pain for over eight years reduces confidence and belief. It even (warning, I’m going to use the C word), discourages hope for a cure. But how could I have assumed I found my best self for four years (nearly five actually, gulp!)? Continue Reading

Back on the treatment trail

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VicpainHomeScreen

Maybe I should have titled this post, ‘Back on Pain’s roller coaster‘? But then I’d have to explain my position – which would it be? Up or down? Or is this another case of in the middle – managing?

I have many descriptions for my health status and they are constantly revolving around in my head. That’s because I don’t know where I ever stand with this chronic pain. And there seems to be no one else who knows where I (or you!) stand either. So damn frustrating.

But last year, I got fortunate. Someone planted a seed… Continue Reading

Committment, sacrifice and granting myself the right permissions

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Soula In TassieLast 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. Continue Reading

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

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Soula On National Pain Report

by Soula Mantalvanos

My pain began in 2007 when a fitness ball I was sitting on burst and I dropped onto a concrete floor. The pelvic pain that began then, I still have today: a gnawing, itching, toothache like, burning pain that causes weakness to my legs and leaves me unable to lift more than a couple of kilos or sit without constant pain.

Soula Mantalvanos

The pain worsens after any of this activity and seems to gather in a sensory flare throughout my lower spine when I go to bed. It’s unbearable.

I had many treatments, including the removal of a pelvic recto/vaginal septum. This restored my ability to at least shower barefoot and bury the hellish feeling of having my finger stuck in an electric socket whenever I hear a loud noise or am near vibrations.

But I only shed one layer of my great onion of pain. I had not been diagnosed yet and felt lost. Continue Reading

My Peripheral Stimulation implant

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I’ve had quite a few emails asking about my implant so I thought I’d create a more informative post. Given this device was a life changing treatment for me, I really haven’t given it its due attention. Implants are becoming more common for the treatment of pain, so it’s definitely worth getting my experience online.

I have to start with the pre implant status so you can all understand the impact the peripheral stimulation device had made for me (and I’ll call it my ‘stim’ if you don’t mind). I had just had diagnostic cortisone to my coccyx and had three wonderous days of complete relief. Hard to understand that’s even possible when a person can’t sit, stand, function without great levels of pain at every moment of the day.

I had presented to so many specialists (note the pages from my book, Art & Chronic Pain – A Self Portrait, of what my calendar looked like from 2007 -2009) and was labelled ‘the most severe case’ often. I had not been diagnosed as yet, I was lost, nowhere else to turn.

Self Portrait Book Calendar page ©SoulaMantalvanos The complete relief response I had from the cortisone shot to the coccyx was ‘progress’. Has your practitioner told you in investigating your PN treatments that you might learn ‘what you don’t have or don’t need’? This is what’s meant by ‘diagnostic’. You almost have to work backwards with PN, cross off ‘what isn’t the case” and in my case, I had learnt I didn’t have ‘mechanical’ pain, I had neuropathic pain. My ‘mechanical’ surgeon, Mr Roy Carey, then handed me over to Professor Peter Teddy, and I have much admiration, respect and thanks to express for that moment. Continue Reading

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.

My ‘Fatty’ tail aint fat afterall!

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Fatty TailClosure 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!’ Continue Reading

Next stop: Traditional Chinese Medicine with Raffaele Vavala

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Acupuncture6Although I’ve tried acupuncture many times before, I’ve never felt as much of a response as I am feeling now after my four sessions with Raffaele Vavala. It’s possible my body wasn’t ready for it, being in ‘the thick of it’ until about a year ago my onion was just too big!  But I also believe some practitioners do have more of a gift than others and Raffaele is gifted!

The consultation methods make great sense to me. My scans have been considered, but my tongue, palms and pulses on both wrists do all the pain and story telling. These body parts describe a system that is quite debilitated after dealing with the years of Chronic Pain, an issue Raffaele understands in-depth. So when I speak of sounds hurting, activity accumulating into a flare up fire-ball, fluid retention, my legs unable to move with extreme heat conditions, the desperation for Western intervention in the form of an implant and nerve blocks, my exhaustion that arrives with the pain and ‘protects me’ by encouraging me to sleep, the inability to focus, reach out and ‘just move that thing’ or carry out a simple task, the ability to create seeming too exhausting, Raffaele understands… ALL OF IT.  He reminds me of my diagnosing physio, and for once I’m the one staring in disbelief at their look of complete understanding for me (when other practitioners screwed up their faces or frowned at my statements). Continue Reading

Building blocks… I hope!

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BlockFeature

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:

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!

Continue Reading

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… Continue Reading

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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