Looking for Something?
Posts Tagged for

explanation

Dr Doidge, Are Some Brains More Plastic than Others?

Author:
DrNormanDoidge02

I never shop from my phone, but given Theo and I were away for the weekend (researching our next phase of life), I felt it was worth the risk responding to The School of Life‘s Dr Norman Doidge event and booked our two tickets.

Glad I did. The event was sold out within the week and over 300 people were on the cancellation list.

In 2011, after my peripheral stimulation device was implanted (and having my reading ability restored), I reached for  Dr Doidge‘s, The Brain That Changes Itself, and grasped the idea to contact Prof Lorimer Moseley who was referenced within the book.

That idea led to my diagnosis.

So my mind ran. What might happen if I actually met Dr Doidge?! (more…)

An Integrated Approach to Pelvic Pain

Author:

Interview with Robert J. Echenberg, medical advisory board ICA.

ICAUpdate-(2015-Spring)Echenberg-1Dr. Robert J. Echenberg is the founder of the Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pennsylvania. Previously known as the Institute for Women in Pain, Dr. Echenberg’s practice is one of the first privately owned multi-disciplinary practices exclusively specializing in assessment, diagnosis, and treatment of chronic pelvic pain (CPP). Since its inception in 2006, the Institute has treated more than 1,200 women and a growing number of men with pelvic and sexual pain disorders from 25 states and five countries.

A member of ICA’s Medical Advisory Board, Dr. Echenberg is the author of the book Secret Suffering: How Women’s Pelvic and Sexual Pain Affects Their Relationships. Dr. Echenberg spoke with ICA Update about IC and overlapping conditions, why education must come before medication, and ways in which the medical system must change to address the needs of patients with overlapping chronic inflammatory and pain conditions.

An Integrated Approach to Pelvic Pain was published in the current edition of the ICA Update.

The Interstitial Cystitis Association (ICA) is the only nonprofit association dedicated solely to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).

Interview—Mark Toner
Mark Toner is editor of ICA Update

Talk about how IC fits into the variety of overlapping conditions you treat.

I started this program in 2001 when asked to develop a nonsurgical approach to female pelvic pain through our  department of obstetrics and gynecology. We knew that all over the country young women were receiving multiple invasive diagnostic and therapeutic procedures for persistent and otherwise unexplained painful symptoms in the pelvic region (between the belly button and mid thigh). I found early on that IC was a cornerstone, if not one of the most common triggers of pelvic pain.

There’s a huge spectrum of pelvic pain patients, both male and female. Many conditions within the pelvic organs such as IC, endometriosis, and IBS are common organ or visceral generators of pain within the pelvis, but what I soon realized is that we were generally not even thinking of all the muscles, ligaments, and nerves that almost always contribute to the pain itself.

Much of the literature and my own experience since 2001 points to bladder pain syndromes being at least part of the picture of chronic pelvic, genital, and sexual pain about 80 to 85 percent of the time. That’s a huge number, and chronic pelvic pain translates into tens of millions of individuals in the U.S. alone. Not only are multiple parts of the anatomic pelvis involved in persistent painful pelvic symptoms, but there are also many overlapping inflammatory issues and other pain syndromes commonly associated with CPP. These include migraine, fibromyalgia, TMJ, multiple chemical sensitivity syndrome, all the autoimmune disorders, and others. IC patients are among large numbers of people suffering not only pain, but also fatigue, sleep disorders, hypersensitivities, allergies, and other slowly disabling illnesses that plague our health care system. (more…)

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

Author:

Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

(more…)

SBS Insight: Ouch!

Author:

Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

What do I do with my trigger points now, Dr Quintner?

Author:

John Quintner, Professor Milton Cohen and Dr Geoffrey Bove recently published a very controversial review – A critical evaluation of the trigger point phenomenon. Their article aims to show the hypothesis – “Myofascial Pain arising from Trigger Points” – formulated in the 1980s by Travell and Simons, is ‘flawed both in reasoning and in science’.

Being closely aquainted to John (albeit via cyberspace), I sought a patient’s explanation. What does this mean for me and others with chronic pain erroneously attributed to myofascial trigger points?

How many years have you been practising and researching chronic pain?

I commenced my career in rheumatology in 1975. My interest in chronic pain dates from 1985, when I admitted to myself that I had no idea about what was then being called “RSI”. Without a research background I was left with no other option but to learn “on the job”. I remember that some of my rheumatology colleagues would laugh at those of us who were making a serious effort to understand these conditions. But these were extraordinary times when a fierce debate over the validity of “RSI” as a compensable condition was raging across Australia.

Do you believe pain will be explained one day?

The short answer is NO. Attempting to explain the experience of pain is inextricably linked to our inability to explain consciousness. You could ask if we will ever explain LOVE and I would give you the same answer.

What might your research mean for someone with chronic pain?

Along with those with whom I have collaborated, and the list includes Professor Milton Cohen, Mr Robert Elvey and Dr Geoffrey Bove, my research has been aimed at shining the torch of critical scientific inquiry upon a number of complex and poorly understood conditions. From our attempts to do so, I hope that in some small way we have helped people in chronic pain to avoid the stigma that is so often conferred upon them by members of our society, including their well-meaning medical and other health professionals. (more…)

Blog | Sexology 101 | The Internal Clitoris

Author:

Museum Of Sex Img_0927Hallelujah! Pardon my pun here, especially as I’m preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it’s essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.

(excerpt from The Internal Clitoris. Read full post here)

…Let’s also remember, female orgasm is not solely about the clitoris and vagina either. It is far more complex and also involves the workings of multiple nerves, tissues, muscles, reflexes, and mental effort. Some women can think themselves to orgasm. Others can orgasm simply by flexing their pelvic muscles. Considering all the components involved plus the variability of human beings and their anatomies, it’s extremely important to remember no two people are the same. What works for one woman may not work for another. In other words, it’s all custom under the hood….

…What really blows my mind is the plethora of misinformation that exists in textbooks, professional medical guides, and on the internet. Take for example, in one of my undergraduate textbooks titled Understanding Human Sexuality, the clitoris is depicted merely as just the glans. The sad fact is it wasn’t until the 1990’s that researchers began using MRI to study the internal structure of the clitoris. By then, the intricate details of the penis were already well-known.

(Some of you may find these drawings explicit. You may also have to turn off your ‘safety’ to watch this)

(more…)

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

Author:
Soula On National Pain Report
(http://americannewsreport.com/nationalpainreport/my-story-a-pain-in-the-coccyx-8823596.html)

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.

I had cortisone injections to my coccyx and sacroiliac joints, giving me three days of complete pain relief, which was labeled progress. I learned what’s meant by “diagnostic injections”. I also learned that I had neuropathic pain, not “mechanical” pain. My “mechanical” surgeon then referred me to a neurosurgeon.

I begged my neurosurgeon to do anything, even to chop my coccyx off. But after getting opinions from other surgeons, he suggested not to go the invasive path as we had the option for an implant called a peripheral stimulator, a treatment that was reversible. It made more sense. (more…)

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

Author:

I’ve mentioned before I live in an art hub of Melbourne. I’ve also made it clear how much I love my community and how much the people living beside me have helped me manage my pain by energising me with their friendship, their creative work and some most distracting conversation.

These inspiring creatives (across all forms of art media), make me feel at ease, even as my painful-Soula-self. Whether in pain, feeling (or not) up to outings, when I appear leaning and sitting in all sorts of positions, and in some cases requiring their help to carry things home, or leave them behind for Theo to pick up later, I always feel accepted and loved, and that makes me so damn happy!

So, when one of those divine people, Marguerite Brown, reviews my book, I feel quite chuffed. In fact more than chuffed, honoured, that she spent her time to write a review in her own beautifully articulated words and publish it on her amazing blog, Visual Pursuits.

For anyone considering purchasing my book, or if you already have, I recommend Margue’s insight, it’s a brilliant review. Here’s a snippet:

In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath.

Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years.  These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.

Soula weaves her story through a spare yet effective use of text, combined with evocative imagery that gives visual form to one of the most insidious aspects of chronic pain, its complete invisibility to the outside world.

To convey the loss of control over her physical being that has been presented by Pudendal Neuralgia, the artist commissioned a marionette in her own likeness by marionette maker Colleen Burke.  The result is an exquisitely crafted and hauntingly realistic version of herself in doll-like form. Soula paints, draws and collages representations of the marionette at various points throughout the book.

Read more…

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. (more…)

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.

Subscribe via Email

Enter your email address to subscribe to new posts by email.

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.

Be prepared at your next appointment, subscribe to {Pain}Train

Order my book $39 (+postage)

Archives