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

Author:
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

The Medical Panels assessment of my work capacity 2014

Author:

Medical Panel Opinion CoverLetterI know many of you have been waiting for this post. I have been waiting to post it myself but one guess what was in my way? A response from my WorkSafe Agent… and I’m still waiting for it!

I received my Medical Panel’s opinion and they agreed with the capacity I had presented. I was honestly stunned. My opinion read:

Question 1. Whether the worker has a current work capacity and, because of the injury, is, and is likely to continue indefinitely to be incapable of undertaking –
(ii) further or additional employment or work ; or (ii) further or additional employment or work that would increase the worker’s current weekly earnings and,
Answer: (i) yes (ii) yes
Question 2. If not so incapable, what further or additional employment or work the worker capable of undertaking?
Answer: Not Applicable

Further to the report that followed bewildered me, tears streamed down my face. I actually didn’t want Theo to read it to me, I was too fearful I’d read another limiting opinion, like the previous one that has me bound to a ‘Chronic Pain Disorder’ that no one understands. Or, worse still, it was going to be like the Impairment Assessment where the Neurosurgeon on that panel wished me ‘a miracle’ on the way out whilst contributing to the decision of: ‘0% whole person impairment… The degree of impairment is permanent’.

Theo began… he read mostly accurate details that I had voiced to the Medical Panel, I couldn’t believe what I was hearing. Continue Reading

Off to the Convenor of Medical Panels with my invisible pain

Author:

You know that feeling before something great is going to happen, like just arriving at the airport and knowing you’re off on a great holiday? It’s a great feeling isn’t it? Makes your insides really happy, the body and mind get a lift, and troubles seem to slide away, everything feels like it’s going to be alright. Well, I couldn’t feel more the opposite right now. I have an appointment with the Convenor of Medical Panels on Tuesday and I’m feeling more like I’m facing a funeral.

Who are the Convenor of Medical Panels for those lucky enough not to have had any experience with them? I’ll just pop in their website information as they explain it best:

Medical Panels are constituted pursuant to the Accident Compensation Act 1985 and the Wrongs Act 1958.
A Medical Panel may be asked to provide an Opinion where there is disagreement or uncertainty about aspects of a WorkCover related injury or medical condition.
A Medical Panel may be asked to provide a Determination where there is disagreement or uncertainty about the degree of impairment resulting from an alleged Wrongs Act injury.
A Medical Panel Opinion or Determination on a medical question must be accepted as final and conclusive.

If you’re an injured worker, you won’t need to read on as you’ve either experienced the Panels yourself, or after reading the above lines you’ll know exactly what I’m about to say. For those who are not injured workers and want to understand your injured worker friend, read on. And if you are a Panels assessor*, please, consider the following and what injured workers have to endure when they face you.

Following, are my thoughts and the questions that will swivel around my brain, down my spine and burn my pelvis until this appointment is over and the final decision is mailed to me. Continue Reading

The Hurting Strings, my crowd funding campaign

Author:
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.

On A Current Affair tonight!

Author:
A Current Affair

A Current Affair 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

Reply to my ‘Fair Assessment for Compensation letter’

Author:

Fair Assessment LetterAfter speaking with Kris Vanston I now know that injured workers do have the Victorian Ombudsman to turn too for unfairness issues within the WorkCover system.

I had my doubts about contesting my impairment score of 0% (that was deemed permanent I might add), as I am very well aware and have ranted aplenty about Chronic Pain NOT being acknowledged in the guidelines that are used to assess injured workers. That means there is Australian legislation (I’ll rephrase; it is legal) for WorkSafe practitioners to ignore Chronic pain, thus Pudendal Neuralgia. No where within the system will any WorkCover practitioner be able to assess an injured worker’s Chronic pain. I’m experiencing the result of this, I’ve been living this ignorance since March 2007.

I wrote a letter that was ignored for a few months by our WorkCover Minister, WorkSafe and SafeWork Australia. The Victorian Ombudsman employee informed me not to use the ‘info’ email address but rather the ‘enquiries’ one when I’m writing to WorkSafe. Ridiculous but he was right and I eventually received a response.

(Enter sarcasm) I now feel completely healed and completely relieved with the empty response I received. It managed to ‘acknowledge’, ‘agree’, ‘assure’ and confirm all the points relating to this outdated system that I initially made in my letter. I’m also more at ease knowing everyone who assessed me ignored all my symptoms and inabilities and that was legal. I’m also proud of the staff at WorkSafe who are happy to abide by ignorant and narrow-minded measures that would also apply to them in the event they injured themselves at work. Above all, I’m in awe of the WorkSafe staff and all related employees and practitioners who’s reports are so loyal and discerning of these out-of-date AMA4 guidelines (with pain chapter removed), and The Accident Compensation Act 1987.

This template response clearly indicated to me that anyone with chronic pain and with any of the following symptoms/limitations, as a result of a workplace accident will not get compensation: affected toilet function, spasms where you really don’t want them, sensory pain (in my case throughout the pelvis), toothachey nerve pain, weakening legs, burning, zinging, if you have limited sitting ability, if you are limited in walking, standing, working, lifting, bending, exercising, if you have an implant as a result of pain (or even if you need one for that matter), if you rely on daily help, if you can’t drive, shop, sit and type this damn email in one hit etc etc…! Continue Reading

My ‘Fatty’ tail aint fat afterall!

Author:

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

Peeling onion layers… “No.6!?”

Author:

Onion

Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this:

  1. Removal of pelvic thickened ligament
  2. Peripheral stimulation device implant
  3. Diagnosis
  4. Nerve blocks
  5. Medication
  6. … Could it be my Traditional Chinese Medicine? Continue Reading

Subject: Fair Assessment for Compensation?

Author:

For those subscribed to this Fair Assessment For Compensation post, I have had a reply and it is posted here!

AN OPEN LETTER TO WORKSAFE AUSTRALIA

(CC’d The Hon Gordon Rich-Philips)

SUBJECT: FAIR ASSESSMENT FOR COMPENSATION?

My name is Soula Mantalvanos and I am an injured Australian worker ever since an unfortunate incident in March 2006 where the fitball I was sitting on burst and I fell on to concrete. I was diagnosed after 4.5 years, with a painful condition that is often misunderstood; it is Pudendal Neuralgia (specifically Pelvic Chronic Pain).

MedicalPanels

Obviously you will be able to imagine the difficulties I have had in the WorkCover system with such an injury. Six years down the track, at the age of 43, I am left without weekly payments and an impairment score of 0%. I seriously question whether I’ve ever been assessed fairly.

In the Preamble of the National Workers’ Compensation Action Plan 2010-2013, a paragraph (b) recommends providing “fair” compensation for work-related injury, illness and death. As far as I can ascertain, “fair” means “marked by impartiality and honesty, as well as free from self-interest, prejudice, or favouritism.” Does this definition coincide with that intended by WorkSafe Australia? Continue Reading

PN Directory: Who can help and where in the world are they?

Author:

Pudendal Neuralgia treaters around the world

I’m sure there are more practitioners and therapists helping with Chronic Pelvic Pain but these are the ones I have been in touch with or have been referred to from other specialists. Please let me know if you have been treated appropriately so I can keep my resource up-to-date. I do particularly want to hear personal recommendations but I also need approval to list anyone here.

Australia

Melbourne

Adele Burgess
Head of Dept. Colorectal Surgery
The Austin Hospital, Heidelberg, VIC.
Private Consulting Main Rooms:
Suite 7, Level 2, 8 Martin Street, Heidelberg VIC 3084.
Phone: 03 9456 9077 Fax: 03 9456 9177
Also at : Epworth Hospital, Richmond VIC
www.adeleburgess.com.au

Peter Courtney
499 Springvale Road, Glen Waverley, VIC, 3150
Phone: (03) 9566 2733
Melbourne Pain Group

Dr Bruce Mitchell
Metropain Group

Sports & Interventional Pain Physician
Level 1, 544 Hawthorn Road, Caulfield South Victoria, 3162
Phone: (03) 9595 6111
bmitchell@metropain.com.au
www.metropain.com.au

Julienne Moore
Associate Physiotherapist
Albert Street Medical Centre
Level 4, 372 – 376 Albert Street, East Melbourne, Victoria, 3002.
Phone: (03) 9486 0512
julienne@fitwise.com.au
www.fitwise.com.au

Pain Matrix
Dr Michael Vagg – Pain Specialist, Dr Diarmuid McCoy – Pain Specialist, Dr Brett Chandler – Pain Specialist, Jenny Bravin – Psychologist, Emma Musella – Clinical Psychologist, Dr Stephen McKenzie – Psychologist, Lucy Schipanski – Physiotherapist, Ben Boyd – Practice Manager
Suite 8 | Level 2 | 73 Little Ryrie St
Geelong Victoria 3220
Phone: 03 5229 6996 Fax: 03 5229 0941
info@painmatrix.com.au
www.painmatrix.com.au

Anne-Florence Plante
Pelvic Chronic Pain,
The Women’s Physiotherapy Department
The Women’s chronic pelvic pain pdf

Professor Teddy
(Responsible for my peripheral stimulation device)
Precision Neurosurgery

Phone: 1300 773 247
info@precisionneurosurgery.com.au
Neurosurgeon, The Royal Melbourne Hospital, Western Hospital, and Northern Hospital

Victorian Pain Specialists
(my current treatment team)

27 Erin Street
Richmond VIC 3121

1300 798 682 (tel)
1300 798 385 (fax)
reception@vicpain.com.au
vicpain.com.au

Queensland

Sue Croft Physiotherapist
Physiotherapy for Pelvic Floor Recovery
47 Hampstead Road, Highgate Hill, Qld, 4101
Phone  07 3848 9601 Fax 07 3846 6811
Mob: 0407 659357
www.suecroftphysiotherapist.com.au
twitter.com/scroftpf

Peter Dornan Physiotherapy (Specialising in Men’s Health)
13 Morley Street,
4066 Toowong QLD, Australia
Phone: 07 3371 9155
peter@peterdornanphysio.com.au

Robin Kerr
Integrated Pelvic Physiotherapy
7 Maud Street Nambour QLD, 4560
Phone:(07) 5441 4764
robin@ipphysio.com
www.ipphysio.com

South Australia

Dr Susan Evans
38 The Parade, Norwood SA, 5067
Phone: 08 8363 2811  – for appointments (except physiotherapy)
Phone: 08 8363 7071 – for physiotherapy appointments
drsusanevans.com.au

Sydney

Sherin Jarvis
Pelvic Floor Physiotherapist and a Conjoint Lecturer, UNSW
Level 12, 97-99 Bathurst St, Sydney,
Phone: 1300 722 206
info@whria.com.au
Women’s Health and Research Institute of Australia

Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Gynaecologist and Pain Medicine Specialist
Conjoint Professor, UNSW
Level 12, 97-99 Bathurst St, Sydney,
Phone: 1300 722 206
Women’s Health and Research Institute of Australia

Western Australia

Alison Lutz
APA Continence and Women’s Health Physiotherapist
Hillview Physiotherapy
6/294 Gt Eastern Hwy
Midland  WA 6056
Ph:08 9274 5666 Fax: 08 6230 5376

Timothy J G  Pavy
Head, Department of Anaesthesia and Pain Medicine
King Edward Memorial Hospital for Women
374 Bagot Road, Subiaco, Western Australia 6008
Clinical Associate Professor, School of Medicine and Pharmacology, University of Western Australia
Phone: 08 9340 2222 Fax: 08 9340 2227
Tim.Pavy@health.wa.gov.au

Judith Thompson
Dip Physio, Post Grad Dip Continence and Women’s Health,
PhD, FACP, APAM
Clinical Director & Specialist Continence and Women’s Health Physiotherapist
Shenton Park Clinic
215 Nicholson Road Shenton Park WA 6008
Phone: 08 9381 7940 Fax: 08 9381 7941
www.bodylogicphysiotherapy.com

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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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