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On A Current Affair tonight!

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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:

Dear Mr (case manager),

Re:   Medical Report for Soula Mantalvanos

Thank you for your letter of 8 April regarding Soula.

In response to your queries, I would answer as follows:

Soula was referred to me by Mr Roy Carey (Orthopaedic Surgeon) in October 2010.  Her history was that of, in 2007, having fallen to the floor on her right buttock from a fitball that had burst.  She has suffered severe local sacrococcygeal pain ever since.  She failed to respond to a great variety of conservative treatments at the … and obtained pain relief only by lying inert most of the time.  She appeared to have coccydynia.  A coccygectomy was reluctantly being considered.  This procedure is frequently unsuccessful in relieving coccygeal pain other than in fairly specific circumstances and I felt it worthwhile offering her a trial of peripheral field stimulation in the first instance.

Temporary stimulation was carried out on 19 January, 2011 and resulted in very considerable pain relief.  It was agreed that we should proceed to permanent implantation of a peripheral nerve field stimulating system.  The permanent implantation took place on 2 February, 2011 at Melbourne Private Hospital.

I saw Soula for review on 24 March, at which stage she reported that her system was working very well and giving her substantial pain relief.  She still found that she had to work within her own pre-set limits of functional activity but was now able to get around the house and to be able to sleep.  Examination revealed completely healed wounds and no evidence of infection.

With regard your specific points:

1.   Was the surgery successful and did it proceed without complications?
The surgery appears to have been successful in so far as it has provided a considerable degree of pain relief, increased mobility and improved quality of sleep.  It proceeded without major complication.  There was some concern in the first week that she may have a superficial wound infection but this proved not to be the case.

2.   Did the surgery result in increased function/reduced symptoms/pain?
See above.

3.   If so, please provide details.
Formal assessment in terms of reduction of pain on visual analogue scale and outcome measures were not undertaken at the time of the first clinic review as it was felt too early to make any useful such measurements.  More useful assessment will be made at around three months from the time of surgery at the time of Soula’s next clinic appointment

4.   Did these improvements result in an increased capacity for work and participation in rehabilitation/training?
This will need to be assessed at the time of her next visit.

5.   Has the surgery assisted the patient to progress towards self-management?
Yes.

6.   What restrictions are now recommended to RTW?
See above.

Please do not hesitate to contact me if further information is required.

Yours sincerely
(Neurosurgeon’s name)

And after I had taken the matter to conciliation I received this from the WorkSafe Agent and please entertain me and check the dates of the letters and the words in red below where the Insurer states they did not receive my surgeon’s letter (which I personally emailed copies of after the surgeon mailed his!!!!):

22 July 2011

I am writing to you about the letter dated 15th December 2010 from (Neurosurgeon’s name) received by (WorkSafe Agent’s name), requesting payment for a trial of peripheral field stimulation x 2 electrodes for you.

The role of (WorkSafe Agent’s name)

(WorkSafe Agent’s name) can pay the reasonable cost of elective surgery required as a result of a work-related injury or illness according to the Accident Compensation Act 1985 (the Act).

Review of your surgery request

(WorkSafe Agent’s name) has now completed a review of your surgery request.  When reviewing your surgery request consideration was given to:

the Act, the WorkSafe Victoria Elective Surgery Policy, your WorkSafe claim history and information, the information your surgeon provided.

As part of the review process (WorkSafe Agent’s name) also attempted to obtain further information from (Neurosurgeon’s name) however nothing has been received to date.

(WorkSafe Agent’s name)’s decision

(WorkSafe Agent’s name) are unable to approve the requested trial for peripheral field stimulation x2 electrodes because:

  • Your injury or illness is no longer considered to be work related as per the medical panel’s opinion dated 16th November 2009
  • Therefore, the trial for peripheral field stimulation x2 electrodes is not considered a reasonable medical and like expense according to section 99 of the Act.

Reasons for this decision

The decision not to pay for your trial for peripheral field stimulation is based on the following supporting information:

The Medical Panel Opinion dated 16th November 2009 states that you previously suffered from a soft tissue injury of the lumbo-sacral spine, relevant to the claimed injury, which has now resolved and the Panel conclude the worker is not suffering from any physical medical condition relevant to the claimed injury.

Based on the available information (WorkSafe Agent’s name) are unable to approve the requested procedure.

Feedback

8
  • Marie

    I have had PNE since 2008. Trying everything and considering the Stamford protocol in Calafornia $$$$ saving. Everyday is a big challenge

    • Soula Mantalvanos

      Can you give more information please Marie?

    • Rose

      I to have PNE since 2008 after an operation, still trying things, Stamford Protocol is on my list. America seems so much more advanced in these conditions . Where there’s a will there a way

      • Soula

        Hi Rose, indeed where there is a will there is a way! We have to stay strong and keep searching for our relief. Good luck.

  • Kathryn Malic

    Thank you for being so brave Soula, looking forward to the programme.

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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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