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My list of practitioners

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The most supported I’ve felt is when I’ve come across a practitioner who listens and wants to work with me specifically. I mean really take note of what’s going on and want to learn themselves too. Chronic pain is still so difficult to understand, and of course I can’t recommend or even suggest that my experience might be a solution for someone else but I can provide the contact details for ‘team Soula’.

Stage 1: The Search
Dr Harry Crock, retired
Mr Roy Carey, East Melbourne
Professor Michael Quinn The Women’s, The Royal Women’s Hosptial, Parkville
Pond Massage Water Wellness P/L, Collingwood
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 2: Implant
Dr Kathy Yu, Melbourne Sports Medicine Centre, Melbourne
Pam Frost, Massage therapist, Yoga Healing Centre, Fitzroy
Professor Teddy, Neurosurgeon, Precision Neurosurgery, Melbourne
Marilyn Lock, Knowbody Studios (Holistic physiotherapy), East Melbourne
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 3: Diagnosis
(All stage 2 practitioners)
Robert Postlethwaite, Psychiatrist, Freemasons Medical Centre, East Melbourne
The Women’s – Anne Florence Plante, Physiotherapist, RWH Physiotherapy department, chronic pelvic pain clinic
Dr Peter Courtney, Melbourne Pain Group, Glen Waverley
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

Stage 4: Treatment
Dr Peter Courtney, Melbourne Pain Group, Glen Waverley
The Women’s – Anne Florence Plante, Physiotherapist, RWH Physiotherapy department, chronic pelvic pain clinic
Raffaele Vavala, Traditional Chinese Medicine, 4a Mitchell Street Northcote
Pam Frost, Massage therapist, Inspiral Bodywork, Fitzroy

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…
Diagnosis: Physiotherapy at The Women’s…
Building Blocks…
Next stop: Traditional Chinese Medicine…
Soula’s PN Weather Update…
My practitioners

The car

Author:

I don’t like the car… or other transport. I would be a passenger for a quick trip (cushions galore and my experienced husband driving) and wonder what all the pain was 18-24 hours later. Well once that happened a few hundred times* I pieced it together didn’t I. The car is intolerable. I’m down to two trips a week and actually, I prefer to avoid it all together.

*Insurance snoops, I’m being sarcastic here… a necessity for chronic pain!

Trial and error

Author:

Oh how many times have I had an injection, operation, procedure, great massage, brilliant half an hour and instantly thought I would be back at work in no time? I have a great five minutes and I’m off, it’s happened so many times. What a suck!

But that sort of thinking has been a great survival mechanism for me because with neuropathic pain, I realised I had to be brave, I had to accept there was going to be more pain and there are really only two choices, cope or not! Continue Reading

Head rest

Author:

I always try and use the head rest in the car (as well as my few thousand pillows). I find the more I rest my head the more I can cope with a car ride and also have less pain afterwards. In fact, rest your head anywhere you can, it’s a huge weight off an injured back.

The way relief continued…

Author:

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

The big bang injury

Author:

It wasn’t enough that I kept active by walking the dog every morning, practicing yoga 4 x 45 mins a week, occasionally running the dog a little at the park in the afternoon to break up the day, walking to Fitzroy, Richmond, the City, Carlton, local cafes, dinners, outings, long drives and worked by day and was in the studio by night (whenever we weren’t socialising), I thought I sat too long… so I bought a fitball to make sure my chore stability was being cared for while I was sitting. Hmmm. All was going well until my (antiburst) fitball burst! I fell to concrete flooring in a split second (or as my husband, Theo says, I seemed to hover for a split second before going down).

This was the ‘major’ event that changed my life and 5 years later led me to putting this site together. Still to this day, I can’t believe that ‘bang’ was severe enough to have actually stopped me. I seemed to think I was a little invincible, well I never had any issues before, not one sick day, I was convinced I’d be fine in 8 weeks after having an x-ray that even though looked awfully cloudy to me, came back with fractureless results. But that’s all that was checked. No MRI, no pelvic scan, no SI Joints… after all, it didn’t seem like such a bad accident.

I went back to my Doctor when the 8 weeks were up still complaining of pain and that I could feel something about 2 inches behind me into the right buttock, as if someone had put a thick needle in there and my doctor thought I should be checked out by a rectal surgeon. All clear again, nothing wrong with the coccyx but mind you, hellish pain when I got home and for the next 24 hours. The examination sent me into, what I recognise now, is a flare up. I was confused… how can ‘nothing’ be causing so much pain.

I continued trying to work, deteriorating while my pain increased and with my aids building up around me. I stood on towels to minimise the sensitivity that was getting worse every month, I lay down more, The flare ups were increasing, I tried Massage, Acupuncture, Feldenkrais, Hydrotherapy, a Chiropractor, Pain Management Centres, Psychology, I found an Orthopaedic Surgeon who did extensive x-rays finally and they came back pretty perfect (minor disc bulge)… I was at my witts end. All I was stuck with was a tremendously impressive medical CV!!!

I reached the point where I could no longer stand bare foot, could not lay on my back, had to sleep every day for 1-3 hours to calm the nervous system which was the only way to lower the pain, everything hurt. I stopped working..

In May 2009 I had a follow-up MRI that showed I had a retroverted uterus. This doesn’t mean much more than I have a retroverted uterus, apparently women have either retro or antiverted and actually both as it should move with our motion, but I remembered that I had an antiverted uterus and thought to check it out. My brilliant gynecologist, Professor Michael Quinn (Lifesaver: Ovarian Cancer Testing) who felt things were just a little too tender, whipped me in for a laparoscopy the following Monday.

Of course I thought I was going to be cured. Had to be something simple…

Findings: A very thickened rectovaginal septum and a thickened left uterosacral ligament also. The septum was resected.

I woke up on my back. And strangely extremely relieved to hear that there was something wrong and it was dealt with. The laparoscopic procedure had me in recovery mode for about 5 weeks but I lost the feeling that a 2 inch needle was inside me, I was sitting, I had very little pain, still tender when I sat, but my heel sensitivity was gone and by 7 weeks I could shake myself and it felt wonderful. I went back to Professor Michael Quinn, I told him he cured me to which he obviously replied, I couldn’t have cured your back pain.

I had 3 blissful months before some serious pain began again. Seemed as I increased my capacity another onion layer surfaced. By January 2011 I didn’t know what to do with myself again.

Continue reading: The way relief started…
Download the full story: My story of my struggle with Pelvic Chronic Pain (since March 2007)

Related Posts
My pre pain life…
My family, Theo, Origin of Image & Zephyr…
The way relief started…
The way relief continued…
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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