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Relief

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 Brain That Changes Itself

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The Brain That Changes Itself

The Brain that Changes Itself

Author: Norman Doidg

…The result is this book, a riveting collection of case histories detailing the astonishing progress of people whose conditions had long been dismissed as hopeless. We see a woman born with half a brain that rewired itself to work as a whole, a woman labeled retarded who cured her deficits with brain exercises and now cures those of others, blind people learning to see, learning disorders cured, IQs raised, aging brains rejuvenated, painful phantom limbs erased, stroke patients recovering their faculties, children with cerebral palsy learning to move more gracefully, entrenched depression and anxiety disappearing, and lifelong character traits altered.

Read more from the Norman Doidg’s website

 

Diagnosis: Physiotherapy at the Women’s

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It felt like a miracle and took all of about 15 minutes for the physiotherapist (at the chronic pelvic pain clinic at the Women’s here in Melbourne Australia) to give me her French infused explanation that my pain was most probably coming from my Pudendal Nerve (yes, a name, I had a name!). It took another 15mins for her to put me in on my back (I never lay on my back as it was too painful) and apply a pressure/postural technique that switched my pain off! (Yes, OFF… calm, silence, stillness, roar gone, no spasm, quiet, peace)… unbelievable but this is true.

I won’t go into much detail about how I felt, there really isn’t any way of explaining the relief of having a roaring pain that’s been halting your soul for 4.5 years, identified, clarified, acknowledged, manipulated with a single finger’s pressure point. I can’t explain how it felt to finally know (not hope or dream) that I will eventually become the best I can and that I finally found a practitioner and therapy that was going to help me. I could almost see my issue in the palm of my hand (before I was in limbo and had to come up with my own names, I won’t write them here!!).

What I will describe though, is the language, empathy, understanding and thorough explanations that I have had during my appointments so that anyone else in the same situation will know exactly where they need to go (Actually I’d be surprised if you were still reading! Taxi!! Physiotherapy Department, 1st floor Grattan Street & Flemington Road Parkville VIC).

My conversations have gone something like this:
Me: I haven’t told anyone this but there’s this short denim skirt I have and whenever I wear it I have a less painful day…
Physiotherapist leaves and comes back with a pregnancy/baby pressure belt that is adjustable either side. Et voila, a support for the pelvis adjustable to my requirements which was not so tight over my implant and uninjured side.

Me: In winter, I’m sure it hurts more to walk because my boots are heavier than shoes and I’m wearing a heavy coat.
Physiotherapist: Yes, weight is pressure for the nerve.

Me: I’m on fire today, I have all this burning, like fireworks going on.
Physiotherapist: lies me prone, applies pressure to a pressure point, fire put out instantly. This is a flare up.

Me: I feel like I have my finger stuck in a power point, I have a surge up my spine, the rattle of a tram or car drives me crazy, and don’t scare me or I’ll drop, my legs get weak and I can’t move….
Physiotherapist: Sensory pain.

Physiotherapist: How is your pain now?
Me: My pain is good now.
Physiotherapist: Laughs… but doesn’t really find this funny. Pain is never good.

So now when I have a physiotherapy appointment, instead of blank stares when I attempt to describe the fine details of my pain and activities I get clear descriptions for every point I make, in fact I even get a diagram and descriptive explanation, drawings referencing my insides, url links, and best of all, solutions in the form of techniques to release my pain, positions to release my entrapped nerve, even my husband gets attention, empathy for the difficulty he endures, he is shown the pressure points and techniques so he can help as accurately as possible (therefore finally finding peace for himself!!). I even had an explanation about my extracted ligament and septum, she’d seen it happen with trauma (pregnancy or birth) to the hips.

Finding this wonderful therapist leaves me in a very positive position too. I never had options before, I was told: go home and make yourself comfortable, but now I can calm my pain and I still have further treatments to explore depending on how I progress and this is thanks to the few specialists that have insisted on researching and learning about peripheral neuralgia and not ignored it leaving it a psychological condition or the more general we don’t know with back pain.

Read more about The Women‘s Physiotherapy Department.

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
The way relief continued…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The way relief continued…

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A few months into my implant and I felt like I was human again… my senses were back and it was incredible!! That thick pain fog was lifted and I could taste, smell, see, concentrate, focus, remember, listen, think, plan, dream, enjoy, laugh, read, oh what bliss!!!! And I also realised that the anaesthetic gives great long-lasting relief to my nervous system.

So, clearly it was time for research. Here I was for almost four years thinking my issue must have been motor/mechanical but still considering Regional Pain Syndrome, Pain loops etc along the way. I picked up a book my massage therapist, Pam Frost recommended: Norman Doidge, MD | The Brain That Changes Itself. The book referenced Dr Lorimer Moseley and mentioned something along the lines of him extending the ‘mirror box’ experiment and stated he was Australian!

So I googled… I found an ABC interview with Margaret Throsby that I had actually heard before but not remembered, and many many email addresses for a point of contact. So I wrote… I thought either I can help myself, I can help Lorimer (yes, we’re on first name basis now!) or both! Lorimer’s reply was simple: ‘…tell me roughly where you are and i can link you up with someone good’. And boy did he!!

Continue Reading: Read what happened next…

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
The way relief started…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The way relief started

Author:

During 2010 I visited a pain specialist who was treating me with acupuncture and this specialist suggested I have an epidural injection in my lower spine to see if I might have pain relief and if so continue with one or two more consecutively.

I went to visit my Orthopedic Surgeon, Mr Roy Carey for an update (and dreamt he was going to say, ‘we found the cure for chronic back pain’ which he didn’t of course), but also to discuss the injection idea and he recommended to aim the injection more specifically into the coccyx.

I had that done and my pain relief was only from day two to about day four. But this was enough for Mr Carey to understand my pain issue was not mechanical but rather neuropathic. He referred me to Professor Peter Teddy (professorial fellow in Neurosurgery in the Department of Surgery at Melbourne University) at Precision Neurosurgery.

Prof Teddy listened (and heard!), asked for one more scan, then took my scans, and presented my case to an international conference of surgeons, and also back home to the Department of Surgery at Melbourne University. The suggestion was, rather than take drastic action (which I was willing to take at that point I was so desperate) and remove my coccyx, that we first try a Peripheral Nerve Stimulation device?

In my case, the procedure was much less complicated as I didn’t need the leads to go through the spinal canal but rather along the right side of my sacrum and coccyx. There is a trial period in which the unit sits outside and is ‘plugged in’ via the leads that, yes, are sticking half out/half in your body. Look I know that might sound gruesome to some but please… we’re talking about chronic pain here… it was nothing. A cinch… it worked, it’s in now and giving me great pain relief.

But that’s my experience. This is an operation, infections are a serious consideration here (so is the anesthetic effect, weeeeee!).

This x-ray is me now!!

Continue Reading: The way Relief continued…

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The big bang injury…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

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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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