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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 Design Files

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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. Continue Reading

The Spine & Joint Centre, Netherlands

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The Spine & Joint Centre, NetherlandsThe kindness of the pain world just keeps on delivering… The time and effort specialists take to email and share their resources and offer advice for pelvic pain / Pundendal Neuralgia (PN) is astounding and something that moves me so much. Having the website setup to be able to pass the info on is the ultimate. The chronic pain world is hellish, but like many of life’s screaming contrasts, for all the hellish qualities of pain comes a community that offers warmth, understanding, support, sacrifice, and the utmost kindness.

I can go on but my point is, I’ve found another brilliant pain centre and I want to share it. Quickly. Are you in the Netherlands? I believe you’re a phone call away from changing your pain situation (and participating in a ping pong game after your appointment!). Continue Reading

Peeling onion layers… “No.6!?”

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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

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

Back to life

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Soula's Business Card Origin of Image

Soula's Business Card Origin of Image

Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen.  As if there’d be ANY words for me to explain how I feel writing this post. So please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:

“I’M BACK AT WORK!!!!!!!”

No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!

And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).

It’s been 2,063 days since my ball went burst…

…or

5 years, 7 months, 23 days (including today)

…or

178,243,200 seconds

…or

2,970,720 minutes

…or

49,512 hours

…or

294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).

I feel like… like… ME! And there isn’t a greater feeling. Continue Reading

Express yourself

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I often don’t feel like talking or explaining the same boring chronic pain story over and over. And I’m thinking there may be a few people out there who feel the same. So, here’s some artwork for you folks. Feel free to use it to order caps, t shirts, mugs, honestly, do whatever you want with it, just don’t take my name off or manipulate the artwork.

Oh, and pop me a message of thanks. Perhaps even come back with some images and I’ll create a pain gallery!!! Oh come on, let’s try and have some fun… what other choice do you have?

 Don’t bump me download  It hurts every day download
 Escape the birdcage download  In the birdcage download
Don’t Bump me, It Hurts Everyday and Birdcage artwork by Soula Mantalvanos is licensed under a Creative Commons Attribution 3.0 Australia License.

Intensive 6-day Wise-Anderson Protocol Clinics

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I was referred to two pain management centres in Melbourne. One doctor was happy with my own pain management routine and the other team asked that I agree to accept responsibility for my chronic pain and that I will forget having future x-rays, mri’s etc. if I was going to participate. Well as if I was going to go for that? As reputable as the centre was it didn’t sound right for me and as it turned out, it wasn’t.

This sounds a little more appropriate for me.

Source: chronicprostatitis.com

Intensive 6-day Wise-Anderson Protocol Clinics

Six day Comprehensive Pelvic Pain Intensive Clinics for the Stanford Treatment Protocol

Chronic pelvic pain syndromes have been a puzzle to the best medical minds for a century. Antibiotics, anti-inflammatories, prostate massage, and surgical procedures, which form the backbone of traditional treatments, have been of little use in dealing with these debilitating afflictions. In A Headache in the Pelvis, we describe a new treatment protocol developed at Stanford University’s Department of Urology that has stepped out of the box of conventional medical treatment. It involves a combined medical, behavioral, and physical intervention that has been successful in substantially abating the symptoms of pain and dysfunction in a select group of patients with chronic pelvic pain syndromes. This protocol is based on a new understanding that chronic pelvic pain syndromes are not caused by prostate or organ pathology but instead a chronically contracted pelvic floor that has made an inhospitable environment for the organs and tissues found within it.

This protocol is unusual because it requires the coordination of a physician, psychologist, and physical therapist. Successful results are dependent upon the willingness of the patient to actively comply with the regimen described in A Headache in the Pelvis for an extended period of time. This is in contrast to the conventional form of medical treatment which looks to a quick solution by drugs or surgery with minimal participation of the patient. The solution to this vexing condition is neither quick nor easy and requires a very large expenditure of effort. Our patients are typically people who have had pain and dysfunction for years, have seen numerous doctors, and have unsuccessfully used the conventional treatments.

While we have reached out to the medical community to educate them and to train them to use our approach, at present there are very few who can competently offer our protocol. It is for this reason that we have established these monthly clinics. They are designed to offer the most effective and comprehensive form of the treatment available described in A Headache in the Pelvis.

Perhaps the greatest suffering for patients with pelvic pain syndromes is the sense of helplessness that patients feel in the presence of their pelvic pain and dysfunction. We are not able to help everyone we treat. When we are successful in helping people with this problem, we are able to give them tools to reduce or abate their symptoms. When the treatment is successful and participants comply with the home practice portion of the protocol, some clear reduction of symptoms is usually seen within a period of three to four months. Stable reduction or abatement of symptoms can take several years and in many individuals who respond to our treatment, improvement continues with the use of the protocol.

These clinics train participants to do self-treatment at home. They are done in small groups and consist of approximately 20-30 hours of treatment over the period of 6 days. The content of the workshops consists of:

  1. Individual medical evaluations are done in the department of Urology at Stanford University or at a participating urologist’s office prior to the intensive program, at which time the nature of the condition of the participants will be evaluated and the appropriateness of the treatment protocol determined. (Most insurance plans cover some part of the Stanford evaluation and the extent of such coverage can be determined by the staff in the department of Urology at Stanford prior to the medical appointment at Stanford.)
  2. Training in Paradoxical Relaxation is done over a period of 5 days. The yearlong 36 lesson audio course in Paradoxical Relaxation is included in the cost of the clinic and instruction is geared to using the taped course at home. Cognitive strategies for reducing the impact of frequent negative/catastrophic thinking that accompanies chronic pelvic pain syndromes are part of the curriculum.
  3. Participants undergo physical therapy consisting of pelvic floor related Myofascial/Trigger Point Release or physical therapy self treatment instruction on a daily basis. When a partner is available and willing, the partner receives instruction in the Myofascial/Trigger Point Release geared to the treatment requirements of the participant. Partners who come for training in Myofascial/Trigger Point Release are encouraged to attend the physical therapy sessions. This attendance is included at no extra charge. The intention of this training is to enable a partner to do this component of the protocol at home on a regular basis. Patients receive a map of their trigger points and areas of restriction. This allows the patient to give their personal pelvic trigger point map to a physical therapist in their home area that they continue to work with and/or to assist the participant’s partner do the home Myofascial/Trigger Point Release.
  4. Participants receive information and recommendations on different aspects of treatment of pelvic pain. This information includes relevant educational material describing the physiology, anatomy, and psychology accompanying chronic pelvic pain syndromes. It includes specific stretches, referred to as pelvic floor yoga, recommendations about diet, exercise, and sexual activity. Instruction in appropriate self-administered Myofascial/Trigger Point Therapy is an important part of the curriculum.

Medical evaluation is usually done by Dr. Rodney Anderson at Stanford University or other participating urologists in the San Francisco bay area. The Paradoxical Relaxation training is conducted by Dr. David Wise and the Myofascial/Trigger Point Release is conducted by senior physical therapists trained in the Wise-Anderson Protocol at a site about an hour north of San Francisco.

In the event the treatment protocol is not deemed to be appropriate at the time of the evaluation, other treatment options will be discussed, and the participant will only be charged for the cost of the Stanford medical visit. Both the relaxation training and physical therapy are done on site in Sebastopol California and have no medical/financial relationship with Stanford as participants come to Stanford for the urologic evaluation alone.

Six Day Wise-Anderson Protocol Intensive Pelvic Pain Clinics Northern California

2011
January 27-Feb 1
March 3 – 8
April 7 – 12
May 19 – 24
June 23- 28
July 14 – 19
August 11- 16
September 22 – 27
October 20 – 25
November 10 – 15
December 8 – 13

Contact information
For information and registration
phone: 1 866 874 2225 (toll free)
1 707 874 2225

Escape the birdcage

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Its limiting living in a birdcage!!!

But when you are injured, unable to work, need to rely on a system for money, you don’t want to risk losing your only source of income. So you sit, gagged, locked up, don’t attempt or try anything and that can be most damaging. How did I survive in the birdcage? Continue Reading

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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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