All posts by walksabina

Dear Pain Matters blog readers, My name is Sabina Walker, and I completed a Master in Applied Science (Neuroscience). I chose to focus on the topic of nerve pain because someone close to me had complex regional pain syndrome (CRPS) following crush injury to several fingers. MY UPCOMING BOOK ​ I recently created a website to offer an 'online home' for my upcoming book.  This book will be based on my blog, 'Pain Matters'.    https://walksabina.wixsite.com/painmatters You will also find my social media links including Twitter and Instagram in my new website. You are welcome to follow me on Twitter: https://twitter.com/SabinaWalker18 You can also follow me on Instagram: https://www.instagram.com/painmatterssw/ I am also on LinkedIn: https://www.linkedin.com/in/sabina-walker-b496429/ And on Facebook: https://www.facebook.com/sabina.walker.737 My goal is to continue writing my blog called Pain Matters for years to come. I may also pursue a PHD involving Heart Rate Variability in Nerve Pain Patients. After all, Pain Matters to all of us! Please seek as much help as you can if you are suffering from chronic pain including nerve pain. There are many References included in this blog to assist. Also, please feel free to share your own nerve pain experiences (and any recoveries) via this blog! After all, if you suffer from nerve pain, your experience is worth a 1000 words in any textbook! Wishing hope, inspiration and less pain in this world! Sabina Walker Master Applied Science (Neuroscience) PS If you find any of my Blog Posts interesting or useful, please feel free to share it around amongst your family, friends, colleagues and/or others, via Facebook, LinkedIn, etc. At the end of the day, pain matters to everyone including: - People who live with chronic pain; - People who care for people who live with chronic pain; - People who know people who live with chronic pain; and/or - People who are simply interested in pain matters. So please help get the word out....pain matters to all of us, directly or indirectly! PPS For interested readers, the respected Prof. Peter Drummond and I published the following 24-page Review Paper: Sabina Walker, Peter D. Drummond. Implications of a Local Overproduction of Tumor Necrosis Factor-α in Complex Regional Pain Syndrome [Review Paper, 24 pages]. Pain Medicine (Dec 2011), 12 (12), 1784–807. DOI: 10.1111/j.1526-4637.2011.01273.x http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2011.01273.x/abstract

Can Aromatase Inhibitors and/or Excision Relieve Endometriosis in Women?

Feature Image of artistic depiction of female pelvic area in pain due to endometriosis sourced from:

https://theheartysoul.com/endometriosis-heart-disease-risk/

Dear Pain Matters readers,

JESSICA HIRST, ENDOMETRIOSIS SUFFERER FOR 17 YEARS, WIFE AND MOTHER

Hearing about women like Jessica Hirst inspired me to write this blog post today:

Jessica Hirst (28), a mother of a baby boy, has endured severe pelvic pain due to aggressive endometriosis since she was 11 when her periods started.

Screenshot-2019-04-17-at-12.59.22.png

Jessica and her family

Source: https://www.mamamia.com.au/endometriosis-stories/

Quoting Jessica:

‘It feels like someone is stabbing me repeatedly in the abdomen.  I get a constant burning pain.  There’s an aching that starts in my lower back and comes right down through my legs … it feels like there’s a bowling ball in my uterus.’

Unable to work due to pain, Jessica relies on her husband as her full-time carer.  Despite her excruciating pelvic pain, Jessica finds joy and happiness in their 18-month old baby boy.  Jess is urgently in need of treatment.

Source:  ‘It’s like someone’s stabbing me in the abdomen.’ – Jessica has been in pain since she was 11 (by Gemma Bath, 18 April 2019).

https://www.mamamia.com.au/endometriosis-stories/

OVERVIEW

Endometriosis is a painful disorder that affects up to 10% of all women of child-bearing age.  This includes approximately 1.5 million women in the UK and 176 million women worldwide.

Furthermore, 71% to 87% of all women with chronic pelvic pain plus 38% of all infertile women have endometriosis.

Endometriosis occurs when the tissue similar to the lining inside the uterus (i.e. endometrium) grows outside of the uterus.  This tissue may be found on the ovaries, fallopian tubes, tissue lining the pelvis (i.e. pelvic peritoneum), ureter, bladder, bowel and recto-vaginal septum.  It has even been found in the lungs and diaphragm in rare instances.

Endometriosis can cause severe pelvic pain during periods, ovulation and/or sex.  Heavy and/or irregular menstrual cycles, infertility, low energy levels, poor sleep and fatigue result.  Symptoms vary depending on where the rogue endometrium grows.  This can affect the women’s overall health and well-being (Amsterdam et al, 2005).

DIAGNOSIS AND TREATMENT OPTIONS

Diagnosis

Women often suffer years of pain before they are finally diagnosed with endometriosis.  It takes 7.5 years on average before endometriosis is diagnosed.  This is because the pain and other symptoms are all-too-often dismissed as ‘normal’ and ‘not serious’.

Endometriosis is diagnosed via biopsy obtained during diagnostic laparoscopy.  This involves keyhole surgery under general anaesthetic.

Treatment Options

Endometriosis is said to be incurable (Howarth, 2019) …

… but is this always true??  Read on…

Several treatments exist that may offer relief from pelvic pain due to endometriosis:

  • Oral contraceptives;*
  • Aromatase inhibitors (e.g. letrozole, anastrazole); and
  • Surgery (excision) to remove endometrial tissue that grows outside of the uterus.

Whilst excision of endometriosis may offer pain relief in some women, multiple surgeries may be required.  Furthermore, there is a risk of recurrence.  Finally, surgery is more invasive than treatment involving aromatase inhibitors.

Studies suggest that aromatase inhibitors (e.g. letrozole; anastrazole) may reduce masses hence leading to relief from pelvic pain due to endometriosis.

Aromatase inhibitors have been used to treat postmenopausal breast cancer patients for over 10 years.

SUCCESSFUL STUDIES AND CASES INVOLVING AROMATASE INHIBITORS FOR PELVIC PAIN AND ENDOMETRIOSIS

(1) An American Study (N=10) Involving Aromatase Inhibitors (Letrozole)

An American study found that aromatase inhibitors (letrozole) significantly reduced pelvic pain due to endometriosis in 9 of 10 patients.

Ten (10) premenopausal patients with endometriosis who had undergone surgical and medical treatment were selected for this study.

Endometriosis was confirmed via biopsy obtained during diagnostic laparoscopy.

Oral treatment of letrozole, together with norethindrone acetate, calcium citrate (to minimize bone loss) and vitamin D (to strengthen bones), was offered daily for 6 months.

Second-look laparoscopy was done following letrozole treatment for 6 months.

The good news:

This 2nd biopsy showed nil endometriosis in all 10 patients.  Nada!  

Furthermore, pelvic pain due to endometriosis was significantly reduced in 9 out of 10 patients following letrozole treatment for 6 months.  Bone density appeared unaffected.

In conclusion, letrozole may offer effective treatment for endometriosis (Ailawadi et al, 2004).

(2) A 2nd American Study (N=15) Involving Aromatase Inhibitors (Anastrazole)

A 2nd American study led by the same doctor revealed that another aromatase inhibitor called anastrazole also decreased pelvic pain due to endometriosis.

Fifteen (15) premenopausal patients with endometriosis and pelvic pain were selected for this study.   

Oral treatment of anastrazole and oral contraceptive was offered daily for 6 months.  Anastrazole treatment led to suppression of estradiol levels.

The good news:

Fourteen of 15 endometriosis patients obtained significant pain relief following 6 months of anastrazole treatment.  Specifically, median pain levels were reduced by 55% while mean pain scores were decreased by 40%.

In conclusion, anastrazole may offer effective treatment for endometriosis (Amsterdam et al, 2005).

 

(3) A Young Italian Woman with Endometriosis Finally Found Relief from Severe Pelvic Pain Thanks to Letrozole (After Ovariectomy Failed to Offer Pain Relief)

A young Italian woman named ‘Maria’ (not her real name) with aggressive endometriosis finally found relief from severe pelvic pain thanks to daily oral aromatase inhibitor (letrozole) treatment for 9 months.

Maria had initially undergone a subtotal hysterectomy as well as removal of both ovaries in an unsuccessful bid to reduce pelvic pain.

Following 3 months of daily oral letrozole treatment, Maria’s pelvic pain including pain during sex was significantly reduced.  Her pelvic ultrasound showed nil endometrial tissue in the pelvis.  Maria’s bone density remained unchanged thanks to daily calcium and Vitamin D supplements.

Given these encouraging results, treatment was continued for another 6 months.

In summary, daily oral aromatase inhibitor (letrozole) treatment may relieve severe pain in young women with endometriosis (Razzi et al, 2004).

(4) The First Woman to be Successfully Treated for Endometriosis via an Aromatase Inhibitor (Anastrozole)

An American woman (57) named ‘Jane’ (not her real name) with aggressive postmenopausal endometriosis finally found relief from severe pelvic pain thanks to daily oral aromatase inhibitor (anastrozole) treatment for 9 months.

Jane had previously undergone a hysterectomy as well as removal of her ovaries and fallopian tubes.

Guess what happened next?

Jane’s pelvic pain completely vanished after 2 months of daily oral anastrozole treatment!

Furthermore, a large 30mm X 30mm X 20mm bright red vaginal lesion had reduced to a mere 3mm gray tissue after 9-month anastrozole treatment.

Bone density was however decreased by 6.2% following 9 months of aromatase inhibitor treatment.

Aromatase inhibitors may offer benefits including pain relief and substantial eradication of endometrial tissue (Takayama et al, 1998). 

(5) Two Sisters Successfully Treated for Severe Endometriosis via an Aromatase Inhibitor (Anastrozole)

Two sisters, aged 24 and 26, had undergone several minimally invasive surgeries (i.e. laparoscopies) that, unfortunately, failed to alleviate severe pelvic pain due to aggressive endometriosis.

Both women received oral aromatase inhibitors (anastrozole), oral contraceptives (for birth control), calcitriol (to minimise bone loss) and rofecoxib (for pain control) on a daily basis for 21 days followed by 7 days off (i.e. a cycle).  Six cycles were offered over 6 months.

Within only 3 months, pelvic pain and other symptoms of endometriosis were eliminated in both sisters.  These positive effects lasted over a year, post-treatment.  

There was nil evidence of endometriosis disease in one of the 2 sisters, as confirmed via laparoscopy done 15 months after treatment.

Bone densities remained normal in both sisters after treatment (Shippen & West, 2004).

(6) A Woman (55) Successfully Treated for Endometriosis via an Aromatase Inhibitor (Letrozole)

‘Joan’ (55) in Belgium (not her real name) underwent a total abdominal hysterectomy 10 years earlier.

Recently, Joan had right-sided sciatic pain that radiated down her right leg due to recurring endometriosis.  

A pelvic ultrasound confirmed an endometrial mass that compressed against her lumbo-sacral plexus.  This mass was 4cm X 8cm in size.   

A daily oral aromatase inhibitor (letrozole) was offered to treat this large mass.

After 12 months of letrozole treatment, Joan no longer had sciatic pain. Following 18 months of treatment, Joan’s mass had shrunk to only 1cm in size.  

Due to a successful outcome, oral letrozole was stopped after 21 months.

Recurring endometriosis may successfully be treated via an aromatase inhibitor (letrozole).  This is a less invasive treatment option than surgery (Fatemi, 2005).

THE SCIENCE BEHIND ENDOMETRIOSIS AND AROMATASE INHIBITORS

An enzyme called aromatase is important in oestrogen production.  This enzyme is absent in normal endometrium in the uterus.

However, this enzyme is aggressively produced in endometriosis, an oestrogen-dependent disease.  Increased aromatase activity leads to high estradiol levels in endometriosis.

Being potent oestrogen blockers, aromatase inhibitors ‘starve’ endometrial tissue of oestrogen.  This leads to shrinkage, and in some cases, complete elimination of endometriosis.

Thus, in the presence of aromatase inhibitors (that block oestrogen production), endometriosis may shrink, and even vanish altogether, during daily letrozole or anastrazole treatment for a certain period of time.

Aromatase inhibitors exert their anti-oestrogen effects on ovaries and on endometrial tissue growing outside of the uterus (Bulun et al, 2001; Ailawadi et al, 2004; Bulun et al, 2004; Amsterdam et al, 2005; Fatemi, 2005).

SUMMARY

In addition to oral contraceptives* and excision, aromatase inhibitors (e.g. letrozole, anastrazole) may offer effective treatment for endometriosis (Ailawadi et al, 2004; Amsterdam et al, 2005).

Isn’t this exciting?

If you know someone with endometriosis, please forward this blog post to her.

Sabina Walker

Blogger of Pain Matters (in WordPress)

REFERENCES

MEDIA

(1) Howarth, Angus. Lack of cash hinders research into condition affecting 10% of women. The Scotsman (8 April 2019).

https://www.scotsman.com/news-2-15012/lack-of-cash-hinders-research-into-condition-affecting-10-of-women-1-4903496

(2) Facts about endometriosis.

http://endometriosis.org/resources/articles/facts-about-endometriosis/

(3) Bulun, Serdar & Wood, Ros. Aromatase in endometriosis.  

http://endometriosis.org/resources/articles/aromatase/

* (4) Endometriosis in adolescence. Women’s Health Queensland

https://womhealth.org.au/conditions-and-treatments/endometriosis-adolescence

PEER-REVIEWED PAPERS

 (1a) Amsterdam et al. Anastrazole and oral contraceptives: a novel treatment for endometriosis. Fertility and Sterility (Aug 2005); 84(2), 300–304.

doi: https://doi.org/10.1016/j.fertnstert.2005.02.018

https://www.fertstert.org/article/S0015-0282(05)00859-9/fulltext

(1b) Ailawadi et al. Treatment of endometriosis and chronic pelvic pain with letrozole and norethindrone acetate: a pilot study. Fertility and Sterility (Feb 2004); 81(2): 290–296.

doi: https://doi.org/10.1016/j.fertnstert.2003.09.029

https://www.fertstert.org/article/S0015-0282(03)02874-7/fulltext

(1c) Bulun et al. Aromatase and endometriosis. Semin Reprod Med (Feb 2004); 22(1): 45-50.

https://www.ncbi.nlm.nih.gov/pubmed/15083380

(1d) Takayama, K, Zeitoun, K, Gunby, RT, Sasano, H, Carr, BR, Bulun, SE. Treatment of severe postmenopausal endometriosis with an aromatase inhibitor. Fertil Steril (1998); 69: 709713.

https://www.ncbi.nlm.nih.gov/pubmed/9548162?dopt=Abstract

(1e) Bulun et al. Role of aromatase in endometrial disease. J Steroid Biochem Mol Biol (Dec 2001); 79(1-5): 19-25.

https://www.ncbi.nlm.nih.gov/pubmed/11850203

(2) Razzi et al. Treatment of severe recurrent endometriosis with an aromatase inhibitor in a young ovariectomised woman. BJOG (Feb 2004); 111(2): 182-184.

https://doi.org/10.1046/j.1471-0528.2003.00038.x

https://obgyn.onlinelibrary.wiley.com/doi/full/10.1046/j.1471-0528.2003.00038.x

(3) Shippen & West. Successful treatment of severe endometriosis in two premenopausal women with an aromatase inhibitor. Fertil Steril (May 2004); 81(5): 1395-8.

https://www.fertstert.org/article/S0015-0282(04)00147-5/fulltext

(4) Fatemi, Human Mousavi. Successful treatment of an aggressive recurrent post-menopausal endometriosis with an aromatase inhibitor. RBM Online (2005); 11(4): 455-457. 

https://www.rbmojournal.com/article/S1472-6483(10)61140-6/pdf

SUPPORT GROUP FOR ENDOMETRIOSIS PATIENTS

There are many support groups including:

(1A) Endometriosis – Perth Sisterhood of Support.

https://www.endoperthsisters.com

Above support group is run by endometriosis sufferers, Joanne McCormick and Monique Alva (see below story).

(1B) Hedley, Kate. ‘The bad days are shocking’: Fresh hope for endometriosis sufferers. WA Today (15 Dec 2017).

https://www.watoday.com.au/national/western-australia/the-bad-days-are-shocking-fresh-hope-for-endometriosis-sufferers-20171214-h04szx.html

 

 

 

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A Doctor and a Nurse who can Literally Feel Pain in Other People

Feature Image of Dr Joel Salinas sourced from:

https://nypost.com/2017/04/18/this-doctor-can-really-feel-your-pain/

Dear Pain Matters readers,

Overview

Most doctors and nurses have great empathy and compassion for their pain patients.

Dr Joel Salinas and Megan Pohlmann, a nurse, take empathy to a new level.  They literally feel pain, physical sensations and emotions in patients.  They have heightened empathy for others that may also be viewed as ’empathy on steroids’, ’empathy in overdrive’ or ‘ultimate empathy’.

Dr Joel Salinas and Megan Pohlmann have mirror touch synesthesia.  This is when a person can perceive someone else’s pain or tactile sensation.

For some mirror touch synesthetes, this can be a curse rather than a blessing.  These people may require long periods alone after being exposed to other people’s pain and emotions.  They may even become recluses in their own homes for fear of ‘sensory overload’.

Others including Dr Joel Salinas and Megan Pohlmann embrace their mirror touch synesthesia as a special gift to help others.  These people apply their unique neurological trait in their work and personal life, when appropriate. 

Joel Salinas, Neurologist

Joel Salinas (34) is a neurologist, writer, researcher and Assistant Professor of Neurology at Harvard Medical School.  As stated, he can feel pain, physical touch and emotions in other people.  This ‘mirrored touch’ ability is automatically triggered by sight.  For example, when he sees someone’s right arm being touched, he feels a touch on his left hand, like in a mirror.  

In Dr Salinas’ words:

[Having mirror touch synesthesia] blurs this boundary between the self and the other’ (Kalter, 2017).

[Mirror touch synesthesia] is as close as I can get to literally putting myself ‘in the other person’s shoes” (Salinas, 2017).

‘… Like I’m the reflection … It’s really like I’m a reflection … Mirror touch is … like an automatic, very physical, super empathy …’ (quoted from video, below).

For more insights into Dr Salinas’ ‘super power’, see his TED Talk dated 18 May 2018:

 

Two interviews with Dr Salinas are also available:

  1. What It’s Like to Have Mirror Touch Synesthesia (a 4-minute interview dated 13 Dec 2018) (https://www.thecut.com/2018/12/what-its-like-to-have-mirror-touch-synesthesia.html); and
  2. Mirror Touch: Rare condition means Dr Joel Salinas feels what others feel (a 7-minute interview by Boston 25 News dated 25 May 2017) (https://www.youtube.com/watch?v=xDj5Xoi8upQ).

Finally, Dr Salinas is the author of a fascinating book called Mirror Touch: Notes from a Doctor Who Can Feel Your Pain. 

Megan Pohlmann, Nurse

As noted, Megan Pohlmann is a paediatric nurse who has mirror touch synesthesia.  This trait often enables her to feel other people’s emotions, pain and other sensations as her own. In her words,

‘If someone’s hurting, for instance, if they have a cut on their arm … when I visualise the injury, I’ll get a feeling on my spine that’s kind of similar to being on a roller coaster.  It’s that gut-dropping feeling … the electricity … shoots up my spine and out my arms and my extremities.’

See 7-minute interview called ‘Meet the nurse who feels other people’s pain – literally’.

https://www.today.com/video/meet-the-nurse-who-feels-other-people-s-pain-literally-1207330371665

Please note that Dr Salinas is also featured in this interview, together with Megan Pohlmann.

The Science of Mirror Touch Synesthesia

A study revealed that 45 of 2,351 (2%) psychology students had mirror touch synesthesia (Medina & DePasquale, 2017; University of Delaware, 2017).

Mirror neurons are said to underlie mirror touch synesthesia (Linkovski et al, 2017).

Prof Ramachandran, a respected neuroscientist, nicknamed these mirror neurons ‘Gandhi neurons’or ’empathy neurons’.  In his words:

‘… You are, in fact, connected not just via Facebook and Internet.  You’re actually quite literally connected by your neurons.  And there [are] whole chains of neurons around this room, talking to each other.  And there is no real distinctiveness of your consciousness from somebody else’s consciousness.’ 

See TEDIndia by Prof Ramachandran called The neurons that shaped civilization (2009; a 7-minute video):

 

A question:

As noted, Dr Salinas’ ‘mirrored touch’ ability is automatically triggered by sight.  For example, when he sees someone’s right arm being touched, he also feels a touch on his own left hand – just like in a mirror.

Could Dr Salina’s experience with mirror touch synesthesia offer certain insight into why mirror therapy may offer relief from phantom limb pain in many amputees? 

See my 4 blog posts for further details on mirror therapy including:

Mirror Therapy for Relief from Phantom Limb Pain Inspired By Professor Ramachandran

Summary

This world is lucky to have many doctors, nurses and other medical clinicians who show empathy and compassion for their patients.

The fact that some doctors and nurses can literally feel their patients’ pain may be one of the highest levels of empathy.

References 

Articles and Book 

Joel Salinas, Neurologist

Articles  

(1A)  Love, Shayla. The Anatomy of Empathy. Vice (8 May 2019).

https://www.vice.com/en_us/article/5973jq/joel-salinas-feels-patients-pain-mirror-touch-synesthesia

(1B) Salinas, Joel. I’m a doctor with a rare neurological condition: I can literally feel your pain. Quartz (30 April 2017).

https://qz.com/969246/mirror-touch-synethesia-doctor-who-can-literally-feel-your-pain/

(1C) Carlton, Lindsay. A doctor who can feel his patient’s pain. Fox News (26 Apr 2018).

https://www.foxnews.com/health/a-doctor-who-can-feel-his-patients-pain

This article includes a 7-minute interview with Dr Joel Salinas:

Mirror-touch synesthesia: A doctor who can feel his patient’s pain

(1D) Ridley, Jane. This doctor can really feel your pain. New York Post (18 April 2017).

https://nypost.com/2017/04/18/this-doctor-can-really-feel-your-pain/

(1E) Angley, Natalie. This doctor can feel your pain. CNN (16 June 2017).

https://edition.cnn.com/2017/06/16/health/turning-points-dr-joel-salinas/index.html

(1F) Kalter, Lindsay: This doc can feel your pain. Boston Herald (3 May 2017).

https://www.bostonherald.com/2017/05/03/kalter-this-doc-can-feel-your-pain/

(1G) Salinas, Joel & Lee, Samantha. What It’s Like to Have Mirror Touch Synesthesia. The Cut (13 Dec 2018).

(a 4-minute interview with Dr Joel Salinas dated 13 Dec 2018)

https://www.thecut.com/2018/12/what-its-like-to-have-mirror-touch-synesthesia.html

(1H) Mirror Touch: Rare condition means Dr Joel Salinas feels what others feel

(a 7-minute interview with Dr Joel Salinas by Boston 25 News dated 25 May 2017)

https://www.youtube.com/watch?v=xDj5Xoi8upQ

A Book by Dr Joel Salinas

(1I) Salinas, Joel. Mirror Touch: Notes from a Doctor Who Can Feel Your Pain. HarperOne (18 Apr 2017); 320 pages.

ISBN-10 0062458663

ISBN-13 978-0062458667

ISBN 0062458663

Megan Pohlmann, Nurse

Articles  

(1A) Kelly, Megyn. Meet the nurse who feels other people’s pain – literally. Today (11 April 2018).

https://www.today.com/video/meet-the-nurse-who-feels-other-people-s-pain-literally-1207330371665

(1B) Seaberg, Maureen. Meet the Nurse Whose Superpower Is Feeling Your Pain—Literally. Glamour (1 Mar 2018).

https://www.glamour.com/story/meet-the-nurse-whose-superpower-is-synesthesia

(1C) Nuñez, Gabriella. People You Should Know: Megan Pohlmann and her world of many colors. krcgtv (14 May 2018).

https://krcgtv.com/news/people-you-should-know/people-you-should-know-megan-pohlmann-and-her-world-of-many-colors

Peer-Reviewed Papers

(1A) Linkovski et al.   2017). Mirror Neurons and Mirror-Touch Synesthesia. Neuroscientist (April 2017); 23(2): 103-108.

doi: 10.1177/1073858416652079

https://www.ncbi.nlm.nih.gov/pubmed/27242280

(2A) University of Delaware. ‘I feel for you: Some really do: Researchers examine unusual condition of mirror-touch synesthesia.’ ScienceDaily (6 Feb 2017).

https://www.sciencedaily.com/releases/2017/02/170206130346.htm

(2B) Medina J & DePasquale C. Influence of the body schema on mirror-touch synesthesia. Cortex (2017);  88: 53.

doi: 10.1016/j.cortex.2016.12.013

https://www.sciencedirect.com/science/article/pii/S0010945216303586?via%3Dihub

The Gall of Gallstones to Cause Pain

Feature Image sourced from:

https://consultqd.clevelandclinic.org/gallstones-watch-and-wait-or-intervene/

Dear Pain Matters readers,

INTRODUCTION

You may have heard a friend or family member say that they have an intense pain in their chest, upper right or mid abdominal area, just below their breastbone.  Alternatively, they may feel pain in their back, right shoulder blade or in between their shoulder blades.  They may feel sweaty, nauseous and an urge to vomit.  They may have to lie down due to pain, especially after a rich and fatty meal.

Patients may not understand why this is happening to them.  Could it be back pain, indigestion, ulcers or irritable bowel syndrome (IBS)?  Or are they simply over-reacting to a spicy meal?

What they do know though is that their pain is severe and repetitive.  This pain may last anywhere from a few minutes to several hours.

Here’s a thought:

Could gallstones* be responsible for the pain?  If yes, then the severe pain attacks will likely persist until properly treated.  Imaging via ultrasound, CT and/or MRI is necessary to rule out the possibility of gallstones that may otherwise lead to a blockage in a duct or gallbladder inflammation (cholecystitis).

If present, gallstones (and gallstone pain attacks) usually do not go away on their own.  Surgery to remove the gallbladder may be necessary.  Alternatively, if only 2-3 gallstones are present, shock wave treatment plus medication may offer relief from pain (although there is a risk of recurring gallstones) (more later).

TWO PATIENT STORIES

Denise Fernholz, Germany 

Denise Fernholz, an editor in Germany, had severe pain attacks for 4 long years. Despite exclusively seeing her family doctor for 4 years, her symptoms were never taken seriously nor was any ultrasound test ordered.  As such, Denise had no idea that excess gallstones were the cause of her excruciating pain.

Denise first felt an intense pain emanating from her breast area when she was 17.  She attributed this pain to her tight-fitting bra.  However, her pain only became worse after she removed her bra.  Panicking, she thought she was having a heart attack.  She felt better after laying down for an hour or so.

After her doctor ruled out any cardiac issues, it was thought that she may have done something to her back.  Unconvinced, Denise hoped for the best anyway.

However, the severe pain attacks kept returning.  Her pain attacks were so unbearable that they rendered her bedridden during these episodes.  Denise felt like she was going to die.  Her parents always wanted to call an ambulance but Denise resisted.  By now, Denise was convinced that she was ‘only suffering from back pain’.  She was worried about being ridiculed by paramedics for ‘calling an ambulance for back pain only’.

Instead, Denise continued to see her family doctor who regularly performed his manual adjustments.

One day, Denise had an MRI that, sadly, did not elucidate the cause of her pain.

As such, Denise was told that ‘her pain was likely psychosomatic’.  She was asked if she had a lot of stress in her life.  Alternatively, ‘did she do drugs?’  Her answer, ‘No.’  Denise was then asked, ‘Are you sure?’  Her answer, ‘Yes, damn it, I am sure!’  Denise added, ‘Can you please prescribe something stronger for my pain?’  

Denise thought that it seemed rather convenient to simply attribute pain as being psychological in origin if a doctor can not find anything wrong with a patient.

Nothing was offered other than Ibuprofen.  Denise felt that no one was taking her pain seriously.  Her doctors simply did not believe her.  

By now, Denise was in her early 20’s.

Denise’s pain attacks would often occur on special days such as birthdays or while away with her girlfriends.  After pizza, Denise would have to lie down in pain.  Then she’d go to the toilet to vomit.  Her concerned friends were tempted to call an ambulance.  However, by now, Denise had become accustomed to her pain attacks.  

Because she’d been told countless times that ‘her pain was due to back tension’, that she was otherwise healthy, that she was ‘merely imagining her pain’ and that ‘her brain was simply fabricating pain to avoid having fun’, Denise even started believing these so-called ‘reasons’ for her pain.

It was much later when Denise finally made a connection between pizza and pain.  

Until then, Denise’s doctor had prescribed gymnastics and sent her to an orthopedist.  Denise was urged to do more sport and given new insoles for her shoes.  She even bought a new mattress for her bed.

Guess what??  None of this helped with her pain attacks!  

Four (4) years went by.

At times, Denise was pain free for a month.  At other times, her pain attacks would occur several times in a week.  However, not once did Denise call an ambulance.

One day, Denise moved to another country to study.  She regularly returned home to visit her parents.  While home, she always returned to her trusted doctor for ongoing pain treatment.  Denise did not want to seek an alternative opinion from a new doctor or hospital for ostensibly back pain in a foreign country where she studied. After all, Denise had no reason to doubt her doctor’s opinion that she had back pain.

The turning point:

Despite being sceptical of alternative medicine, Denise was finally convinced by her friends to see an osteopath.  She felt strange when the osteopath placed his hands on her body.

Denise noted however that the osteopath was the first person to take time to do a proper medical history.  Denise told him about her pain, the vomiting and her doctor’s ‘diagnosis’.

Thereafter, the osteopath was quick to conclude that Denise’s pain did not come from her back, but rather, from her organs.     

During her next visit to her doctor, Denise insisted that he check her organs.

Then came the moment of truth!  An ultrasound clearly showed that Denise’s gallbladder was chockablock full of very small gallstones!  

Diagnosis:  Biliary colic, aka gallbladder attack or gallstone attack.

Because her gallbladder was full of very small gallstones, Denise would feel excruciating pain every time a gallstone would exit her gallbladder and force its way through the bile duct.*  Generally, this would occur after a fatty meal (e.g. pizza).  

Denise’s doctor thought that her newly-revised diagnosis was rather strange given that she was young and not overweight.

Denise, on the other hand, was ecstatic to have finally received a proper diagnosis after 4 long years of suffering due to pain attacks!  FINALLY, A CORRECT DIAGNOSIS!  YIPPEE!

Treatment:  Gallbladder removal surgery

While in hospital during her gallbladder removal operation, everyone was surprised by her gallstone story.  After all, even young, slim women and children routinely presented with gallstones these days.  Furthermore, gallstones were usually easy to diagnose via ultrasonography.

Denise was merely grateful that her gallstones were finally being removed forever.

The good news:

After 4 long years of sporadic and intense pain for ostensibly back pain, Denise finally received a correct diagnosis.  Shortly after, she underwent effective treatment involving surgical removal of her gallbladder.  This led to complete relief from pain (Fernholz, 2018).

Fiona Tapp, a British Freelance Writer and Educator based in the US 

Fiona Trapp first became aware of an intense pain in her breastbone after ordering a huge amount of Chinese food one day.  Thinking that her pain was due to eating too much, she went to lie down in the hopes that her pain would pass.  Instead, her pain got worse as it spread from her chest into her stomach and back.  Fiona felt as if an iron bar had impaled her from the front of her ribs and straight through her back.  Her then-boyfriend (now-husband) tried his best to help by massaging her in between her shoulder blade area.

While enduring excruciating pain for a few hours, Fiona thought that she was having a heart attack.  Fiona’s pain finally went away after vomiting and she fell into a deep slumber.

Sadly, this was not the last of her pain attacks.  Instead, these pain attacks arose at least once every 2 weeks over the next 5 years.  Her severe pain attacks in her chest, stomach and back would wake her up in the middle of the night.  As she cried out in pain, her partner would also be awakened.

Tragically, Fiona went from one misdiagnosis to another.

Fiona’s general practitioner (GP) first suggested that she keep a food diary to help identify any food allergies.  However, her pain attacks would persist regardless whether she drank water or indulged in junk food.

When her friends and family suggested that she might have an ulcer, Fiona returned to her GP.  However, after saying it was ‘just indigestion’, he prescribed antacids (which, of course, did nothing for her pain).

Fiona decided to get a second, and even a third, opinion.  Her third doctor prescribed esomeprazole pills daily for stomach acid.  Of course, these pills also did nothing for her pain attacks.

Upon returning to her GP, Fiona discovered that a new doctor was available to see her instead.  This doctor was energetic, empathetic and cheerful.  Moreover, after reviewing her history and doing some checks, he suggested that there may be more going on than ‘just indigestion’.  He then arranged for Fiona to do some blood tests and an ultrasound.

Guess what happened next?  You guessed it!  Finally, Fiona received a proper diagnosis after 5 long years of pain attacks and vomiting!  Whew!  

Fiona was finally diagnosed with ‘a lot of gallstones’ in her gallbladder, an organ next to her liver that holds bile until it is released to help digest food.*  These gallstones were blocking her bile duct as well as causing pain attacks and vomiting episodes.

Gallbladder removal surgery was recommended.

After awakening from surgery to remove her gallbladder, her surgeon said that her gallbladder was FULL of gallstones.  He had never seen so many gallstones in his entire life!  He also added that he was sympathetic for all the pain that she had endured over 5 years.

Fiona was simply grateful that a correct diagnosis was finally made and that gallbladder removal surgery was done.  Finally, her severe pain attacks ended after 5 long years! 

Please see Fiona Tapp’s inspiring story for more details and advice:  

https://www.healthline.com/health/i-lived-in-hell-for-5-years-due-to-a-misdiagnosis#5

(Tapp, 2017; Stinton & Shaffer, 2012).    

DIAGNOSIS AND TREATMENTS FOR GALLSTONES

Overview

Gallstones are not rare.  They can affect both young and healthy people as well as the young-at-heart.  Between 10% to 15% of adults in developed societies have, or will have, gallstones including 25 million Americans.

Despite being common, gallstones are sometimes mistaken for back pain, food allergies, ulcers, indigestion, excess stomach acid and even irritable bowel syndrome (IBS).

Diagnosis

Ultrasonography is done to diagnose gallstones.  Other imaging techniques (e.g. CT, MRI) may also be useful.

Two Treatment Options

(1) Gallbladder Removal Surgery (Cholecystectomy)

Treatment usually involves gallbladder removal surgery (cholecystectomy).

Risk of Ongoing Pain Despite Surgery in Some Patients

After gallbladder removal surgery, some patients may still suffer from ongoing pain.  As such, the risk of a poor outcome following surgery needs to be discussed with patients prior to surgery (Dijk et al, 2019; Guest & Søreide, 2019; Rapaport, 2019).

(2) Extracorporeal Shock Wave Lithotripsy (ESWL)

Alternatively, extracorporeal shock wave lithotripsy (ESWL) may be offered if there are only a few gallstones (i.e. no more than 3).  This treatment involves generating sound waves (shock waves) from outside of the body.  Produced by a machine called a lithotripter, these shock waves are aimed directly at the gallstones until they shatter.  Medication is usually necessary to dissolve the remaining shattered fragments.

While shock waves shatter gallstones, they are not harmful to muscle, bone or skin.

Risk of Recurrent Gallstones

Despite ESWL being less invasive than gallbladder removal surgery, there is a risk of recurrent gallstones (mydr; Barhum, 2018).

SUMMARY

What lessons can be learned here?

According to Denise Fernolz, if a diagnosis and treatment(s) are not effective, please urgently seek a second medical opinion.  Importantly, always trust your own instincts and feelings (Fernholz, 2018).

According to Fiona Tapp, if your gut feeling tells you that there is something wrong with your body, please persist in trying to get to the bottom of this. Please don’t ever give up.  

Most doctors do want to help their patients get better.  However, sometimes it is up to the patients to also insist on getting further tests done right from the start.   

Patients have to learn to become better advocates for their own health.  They have to learn to become more assertive and take responsibility for their well-being.  After all, they know their own bodies better than anyone else does.   

Patients should never feel as if they are wasting their doctors’ time.  After all, that is what the doctors are there for – to help diagnose medical problems.

Patients and doctors need to work together as a team to properly diagnose medical problems including the cause(s) for any pain.  A patient-doctor team approach will lead to more effective and timely treatments as well as better results and outcomes.

If necessary, patients may need to pursue a 2nd, 3rd or even 4th medical opinion (as Fiona did).  

I hope these 2 stories inspire.

KEY

* Gallstones (aka cholelithiasis) are solid masses, or crystals, of cholesterol or pigment that sometimes form in the gallbladder.  Gallstones may be as small as a grain of sand or as big as a golf ball.  While gallstones are asymptomatic in some people, they may cause excruciating pain in others.

Bile is a yellow-green digestive fluid made in the liver and stored in the gallbladder.  During digestion, bile is released into the bile duct and upper part of the small intestine to help break down the fat in food.

 

REFERENCES

MEDIA

(1) Tapp, Fiona. I Lived in Hell for 5 Years Due to a Misdiagnosis. Healthline (9 June 2017).

https://www.healthline.com/health/i-lived-in-hell-for-5-years-due-to-a-misdiagnosis#1 

(2) Gallstones: Treatment.

https://www.mydr.com.au/gastrointestinal-health/gallstones-treatment

(3) KevinMD (15 March 2005).

https://www.kevinmd.com/blog/2005/03/malpractice-trial-where-physician.html

(4) Rapaport, Lisa. Gallbladders may be removed too often. Reuters (10 May 2019).

https://www.reuters.com/article/us-health-gallstones-surgery/gallbladders-may-be-removed-too-often-idUSKCN1SF28F?feedType=RSS&feedName=healthNews

MEDIA (In German)

(1) Fernholz, Denise. Vier Jahre Schmerzen – Weil ich meinem Arzt vertraute. Protokoll einer Fehldiagnose – Angeblich nur Rückenprobleme. Stern (20 April 2018).

https://www.stern.de/neon/herz/psyche-gesundheit/fehldiagnose–vier-jahre-schmerzen–weil-ich-meinem-arzt-vertraute-7950602.html

PEER-REVIEWED SCIENCE PAPERS AND ARTICLES

(1) Gallstones. Mayo Clinic.

https://www.mayoclinic.org/diseases-conditions/gallstones/diagnosis-treatment/drc-20354220

(2) Fletcher, Jenna. What are the most common gallbladder problems? Medical News Today (16 Nov 2018).

https://www.medicalnewstoday.com/articles/311357.php

(3) Stinton & Shaffer. Epidemiology of gallbladder disease: cholelithiasis and cancer. Gut Liver (2012); 6(2): 172–187.

doi:10.5009/gnl.2012.6.2.172

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343155/

(4) Barhum, Lana. Lithotripsy for stones: What to expect. Medical News Today (3 July 2018).

https://www.medicalnewstoday.com/articles/322355.php

(5) AIHW. Gallstone lithotripsy. Australian Institute of Health and Welfare (1 Dec 1988).

https://www.aihw.gov.au/reports/corporate-publications/gallstone-lithotripsy/contents/summary

(6A) Dijk et al. Restrictive strategy versus usual care for cholecystectomy in patients with gallstones and abdominal pain (SECURE): a multicentre, randomised, parallel-arm, non-inferiority trial. The Lancet (26 Apr 2019).

https://doi.org/10.1016/S0140-6736(19)30941-9

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30941-9/fulltext

(6B) Guest & Søreide. Pain after cholecystectomy for symptomatic gallstones. The Lancet (26 Apr 2019).

https://doi.org/10.1016/S0140-6736(19)30959-6

https://www.reuters.com/article/us-health-gallstones-surgery/gallbladders-may-be-removed-too-often-idUSKCN1SF28F?feedType=RSS&feedName=healthNews

Inserting A ‘Mini Cushion’ and/or Other Implants in the Spine to Reduce Back Pain

Feature Image sourced from:

http://www.vanniveronesi.com/2/minimally_invasive_surgery_mis_interspinous_process_decompression_devices_6893927.html

Dear Pain Matters readers,

Introduction

Degenerative Cervical Myelopathy

The most common cause of spinal cord dysfunction and pain in adults is degenerative cervical myelopathy.  Myelopathy is spinal cord damage caused by disc degeneration (disc bulges), bone spurs (osteophytes) and other inflammatory triggers.

If not effectively treated, back pain, limb sensory loss and abnormal sensations (paraesthesia)* may result.  Gait and hand dexterity may be compromised.

See Anne’s story (below) that highlights degenerative cervical myelopathy including the importance of timely diagnosis and effective treatment

Degenerative Disc Disease   

Countless people suffer from severe back pain due to degenerative disc disease.  

Damaged discs in the spine may lead to reduced shock absorption while walking, jogging or pursuing other activities.  Shortened discs due to injury, disease or prior surgery may cause vertebrae to come into direct contact with one another.  This may result in bone-on-bone pain, sciatica and other complications.

Tingling and/or numbness in the buttocks or legs may occur due to herniated (i.e. bulging, collapsed or slipped) discs.  This may render walking difficult for some patients.

Once injured or arthritic, discs are usually unable to heal due to their avascular nature.  

Sadly, back pain may become a constant companion.

Novel Treatment for Back Pain Resulting from Damaged Discs: An Implant Called a Device for Intervertebral Assisted Motion (DIAM Implant)

Traditionally, the only surgical option for back pain caused by degenerated discs involved fusing the spinal bones together (aka spinal fusion).

A new implant called a Device for Intervertebral Assisted Motion (DIAM implant) is now available that may offer relief from back pain due to diseased or injured discs.

The DIAM implant is as a polyester-covered silicone interspinous shock absorber that works like a ‘bumper’.  Being small and H-shaped, this implant is designed to shift the weight away from the anterior column.  This helps restore the functional integrity of the posterior column of the spine.

Like a small cushion inserted between injured or diseased vertebrae in the spine, this implant may prevent vertebrae from coming into contact, hence preventing further damage to the vertebrae.  By acting as a shock absorber by reducing stress on damaged vertebrae, a DIAM implant may lead to reduced or eliminated back pain.

During surgery, a small surgical incision is made along the spine and a low amount of bone, interspinous ligament, muscle and/or other soft tissue is removed.  The DIAM implant is then inserted into the space between the spinous processes.**  This implant is subsequently attached to nearby vertebrae.

Other Interspinous Spacers Including Aperius Devices

Degenerative spinal disease may also be treated via alternative interspinous spacers including Aperius PercLID system (Fabrizi et al, 2011).

Risks

Wear and tear and/or rejection by the immune system of DIAM implants and other interspinous spacers may occur in some patients.  This may lead to pain and inflammation as well as the removal of affected implants (Seo et al, 2016).

‘Anne’, a 62-Year Old Woman, has Discectomy and Implants for Severe and Painful Cervical Myelopathy

‘Anne’ (not her real name) (62) suffered from severe degenerative cervical myelopathy since she was 59 (although this diagnosis was not confirmed until 3 years later).  As a result, Anne was hospitalised 11 times in the emergency room (ER) in 3 years.

Anne endured pain and abnormal sensations (paraesthesia) from her neck down including in her hands, groins, trunk and legs.  She had a ongoing feeling of water retention throughout her body.

Anne had many strange sensations including:

  • ‘A wet gel-like substance’ had invaded the skin of her face, limbs and trunk; and
  • ‘Something [was] stuck on her skin’ and ‘her hair was stuck down’.

Anne thought that these odd feelings were caused by her olive oil moisturising cream.  (This was because her severe degenerative cervical myelopathy was not diagnosed until 3 years later.)  

During her 11 visits to ER, doctors dismissed Anne ‘for being delusional’ (despite her not taking any psychiatric medication).

While doctors urged her to undergo a psychiatric assessment and a mental health review, Anne resisted.

Anne had back and neck pain as well as numbness and tingling in her arms.  Her legs were stiff and she had difficulty walking.  Anne’s right leg often gave way resulting in numerous falls.   Her coordination and manual dexterity were severely compromised.  Anne had difficulty urinating as well as urinary and faecal incontinence.

Three years later, Anne was finally referred for MRI imaging of her spine.

Following MRI imaging, Anne was diagnosed with severe cervical myelopathy due to degenerative changes in her cervical spine NOT delusions!  Specifically, there was 2 bone spur protusions, one that compressed her spinal cord at C3/4 and another one that led to a narrowing near C5/6.

Surgery for decompression via anterior cervical discectomy at C3/4 was expedited as well as spinal implants.

Following recovery from spinal surgery, Anne’s pain levels decreased while her other symptoms improved.

In summary, despite having been seen by many doctors during 11 visits to ER, Anne was not diagnosed with severe cervical myelopathy until 3 years later.  As a consequence, Anne suffered from intense neck and back pain, abnormal sensations and other symptoms of severe cervical myelopathy for 3 long years.

The good news is that once a correct diagnosis was finally made, and successful spinal surgery was done, many of Anne’s symptoms either decreased or disappeared (Mowforth et al, 2019; Berres, 2019).

A Back Pain Patient Named Rebecca Who Had DIAM Implant Surgery

Having suffered severe low back pain for several years that worsened after becoming a mom of two, Rebecca Morgan of Bristol, UK, said:

‘I started to find everyday activities difficult — even sitting down for any length of time was painful.  The thought of having to lift my son in and out of the bath would sometimes drive me to tears.’

An X-Ray and MRI revealed a collapsed disc as well as changes in the adjacent joints.  Due to the disc’s shortened height, (quoting Rebecca) ‘the nearby joints were inflamed and rubbing together.’ 

In her spinal surgeon’s words:

‘A standing X-Ray showed that one of [her joints in her back] slipped backwards every time she moved or stood up.’

A DIAM implant was inserted between the inflamed joints via minimally invasive surgery.

Rebecca continued with her story (quoting):

‘… my disc was so unsupported and unstable that [the specialist] could move it every which way during the operation.’

No wonder Rebecca had severe back pain prior to her DIAM implant!!

Following successful surgery involving DIAM implant, Rebecca stated (quoting):

‘I was up and walking within a couple of hours after the operation, and within a few weeks I was back to normal. I went on a long-haul flight to Australia, to take the children to visit relatives, just seven weeks after the operation. Now, I’m looking forward to starting pilates classes.’

‘[The DIAM implant] has changed my life … As a result, I have finally said goodbye to all the prescription drugs I used to take, and gone back to the gym.’

In her surgeon’s words:

‘[The DIAM implant] acts as a firm cushion and a stabiliser, and is unique in that it is not made out of metal and isn’t stiff. Rebecca had instant relief and needed only a short stay in hospital’

(Dobson, 2010).

What a heart-warming and inspiring story!

Four Studies Involving Interspinous Spacers (e.g. DIAM Implants, Aperius Devices) for Degenerative Spinal Disease

1. A DIAM Implant Study

A study involving back pain patients (N=68; aged 23 to 75) showed that all patients enjoyed benefits including 92% who had good to excellent improvements, post-DIAM implant.  

Best of all, implant patients enjoyed pain reductions of 71% and enhanced movements by 64% (on average) (Dobson, 2010).

2. A Taiwanese DIAM Implant Study

Back pain patients (N=34) who underwent DIAM implant surgery were followed up for a minimum of 3 years.

All 34 patients enjoyed relief from symptoms.

Specifically, 31 patients (91%) remained symptom free and enjoyed excellent/good results throughout the study, post-DIAM implant. 

However, back pain not due to DIAM surgery nor degenerated discs returned in 3 patients (9%) (Lu et al, 2016).

3. An Italian Review Involving Interspinous Spacers (i.e. DIAM and Aperius Devices) for Degenerative Lumbar Spinal Disease

An Italian review was done of low back pain patients (N=1575) who underwent interspinous device (DIAM or Aperius) insertion for the treatment of degenerative spinal disease.  This included patients with degenerative disc disease (N=478), canal and/or foraminal stenosis (N=347), disc herniation (N=283), black disc and facet syndrome (N=143) and topping-off (N=64).

The average operating time for a DIAM implant was 35 minutes and for an Aperius device was 7 minutes.

Complications arose due to infections (N=10) and fractures of the posterior spinous processes (N=10).  Forty patients required spinal fusion (N=30) or total disc replacement (N=10).

The review reported that symptoms were resolved or improved in 1505 patients (95%) after interspinous device insertion.

This included 924 patients who enjoyed excellent results including nil back pain and complete restoration of mobility after implant surgery.  All 924 patients were able to return to normal work and pursue normal activities.

Another 483 patients had good results including relief of symptoms albeit with some nonradicular pain.  All 483 patients were able to return to modified work.

A further 98 patients had fair results with some improvement in function.  However, these patients could not return to work and/or remained disabled.

Sadly, the remaining 70 patients had a poor outcome following interspinous device insertion.  Their symptoms remained unchanged and they required further surgical intervention.

Having said that, interspinous implant is reversible in failed back syndrome.  More importantly, the vast majority of patients enjoyed partial or complete relief from back pain after interspinous device insertion (Fabrizi et al, 2011).

4. A French DIAM Implant Study

A French study involving back pain patients (N=104) showed that 88.5% enjoyed improvements, 9.6% had no change and 1.9% were indeterminable.

Pain medication intake was decreased in 63.1% of the patients, increased in 12.3% and unaltered in 24.6% (Taylor et al, 2007).

Summary

I hope that the stories about Rebecca and Anne as well as the 4 studies may offer hope to some patients with severe back pain due to degenerative spinal disease.

Sabina Walker, Blogger of Pain Matters (in WordPress).

Key

* Paraesthesia is abnormal sensation.  This may include tingling or pricking (i.e. pins and needles).  This may be due to pressure or damage to peripheral nerves.

** Spinous processes are the vertebrae that stick out in the back of your spine.  These can be felt as bumps on your back.   

Media

(1) Dobson, Roger. Tiny cushion that sits in your spine to cure back pain. Daily Mail Australia (

https://www.dailymail.co.uk/health/article-1240599/Tiny-cushion-sits-spine-cure-pain.html

Peer-Reviewed Paper

(2) Lu et al. Clinical outcome following DIAM implantation for symptomatic lumbar internal disk disruption: a 3-year retrospective analysis. J Pain Res (31 Oct 2016); 2016: 917—924.

https://doi.org/10.2147/JPR.S115847

https://www.dovepress.com/clinical-outcome-following-diam-implantation-for-symptomatic-lumbar-in-peer-reviewed-fulltext-article-JPR

(3) Taylor et al. Device for intervertebral assisted motion: technique and initial results. Neurosurg Focus (15 Jan 2007); 22(1): E6.

https://doi.org/10.3171/foc.2007.22.1.6

https://www.ncbi.nlm.nih.gov/pubmed/17608340

(4) Seo et al. Foreign Body Reaction after Implantation of a Device for Intervertebral Assisted Motion. J Korean Neurosurg Soc (Nov 2016); 59(6): 647–649.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5106367/

(5) Fabrizi et al. Interspinous spacers in the treatment of degenerative lumbar spinal disease: our experience with DIAM and aperius devices. Eur Spine J (2011); 20(Suppl 1): S20–S26.

doi: 10.1007/s00586-011-1753-2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087040/

(6) Mowforth et al. “I am not delusional!” Sensory dysaesthesia secondary to degenerative cervical myelopathy. 

https://casereports.bmj.com/content/bmjcr/12/4/e229033.full.pdf

Peer-Reviewed Papers Not Discussed Above

(7A) Pintauro et al. Interspinous implants: are the new implants better than the last generation? A review. Curr Rev Musculoskelet Med (2017); 10(2): 189–198.

doi:10.1007/s12178-017-9401-z

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5435632/

(7B) Buric and Pulidori. Long-term reduction in pain and disability after surgery with the interspinous device for intervertebral assisted motion (DIAM) spinal stabilization system in patients with low back pain: 4-year follow-up from a longitudinal prospective case series. Eur Spine J (2011); 20(8): 1304–1311.

doi: 10.1007/s00586-011-1697-6

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175853/

(7C) Gazzeri et al. Failure rates and complications of interspinous process decompression devices: a European multicenter study. Neurosurg Focus (2015); 39(4): E14.

doi: 10.3171/2015.7.FOCUS15244

https://www.ncbi.nlm.nih.gov/pubmed/26424338

Media (in German)

(8) Berres, Irene. Eine rätselhafte PatientinDie ist doch verrückt. Spiegel (5 May 2019).

https://www.spiegel.de/gesundheit/diagnose/ein-raetselhafter-patient-die-ist-doch-verrueckt-a-1264438.html

Should Unloader Knee Braces Be Prescribed For Osteoarthritis Knee Pain BEFORE Total Knee Replacement?

Feature Image of an Unloader Knee Brace sourced from:

https://www.ossur.com/oa-solutions/research

An earlier blog post discussed autologous cartilage transplantation for defective knee cartilage:

Transplantation of One’s Own Knee Cartilage – Is this ‘The Bee’s Knees’ for Painful Knees?

Dear Pain Matters readers,

Introduction

Here’s a sobering thought:

The biggest cause of disability in the U.S. is osteoarthritis (OA), with the medial compartment (i.e. inside part) of the knee being most commonly affected (Vincent et al, 2012).

Most medical experts state that due to its avascular and aneural nature, articular cartilage cannot regenerate in vivo, especially during persistent inflammation following trauma or injury to cartilage (Huey et al, 2012).  

Other researchers believe that knee cartilage is able to regenerate in vivo, but only in a chondrocyte-friendly environment.  This would require nil ‘bone-on-bone’, nil localised inflammation, reduced or nil knee pain, healthy synovial fluid in the articular cavity and highly vascularised underlying subchondral bone (Lyu et al, 2011; Tiku & Sabaawy, 2015).

In the absence of effective treatment, deterioration of the knee joint may continue until finally, most if not all of the cartilage tissue is worn out and arthritic.  At this stage, total knee replacement (arthroplasty) may be the only option left.

As such, a proactive approach to knee health is important.  This is because a painful knee joint will either get better or worse.  Nothing stays the same.

The good news is that treatments do exist whereby ‘bone-on-bone’ knee pain may be reduced and even eliminated altogether in some instances.  These include non-weight-bearing exercises such as swimming, aquatic exercises and cycling.  Wearing a fitted unloader knee brace may also be helpful.   

Unloader Knee Braces

Regardless whether cartilage is able to regenerate in vivo or not, fitted unloader (or offloader) knee braces may offer benefits including relief from knee pain, increased knee stability and enhanced mobility.

By shifting the load-bearing weight toward the lateral (outside) part of the knee, the brace may help increase the gap between the femur bone and the medial (inside) part of the tibia.  (The lateral side is usually the ‘good’ side of the knee in patients with medial knee OA.)  This gap reduces ‘bone-on-bone’ and hence leads to reduced inflammation in an OA-affected knee joint. 

An unloader brace-induced gap can promote a chondrocyte- and mesenchymal stem cell**-friendly environment that might lead to cartilage regeneration. 

On the other hand, the absence of normal cartilage or the absence of a compensatory unloader knee brace may lead to ‘bone-on-bone’ between the connecting bones in the knee joint.  Without a gap between the bones, further knee joint deterioration occurs until finally, ‘bone-on-bone’ knee pain results.  Walking may become unbearable unless the patient opts for an unloader knee brace (if beneficial) or has total knee replacement.

Thus, OA knee patients may benefit from a prescription for a fitted unloader brace for walking, hiking and other light load-bearing activities.  Wearing an unloader brace may relieve knee pain, swelling and other symptoms as well as prevent further deterioration in the defective knee cartilage.

For some OA patients, wearing an unloader knee brace may be all that is required ‘to keep going’ and hence, defer costly total knee replacement indefinitely (Mistry et al, 2018).

A Friend’s Unloader Knee Brace Story

Several years ago, I kept running into a nice lady named ‘Jane’ (70) in a nearby park.  Appearing fit and trim while walking her dog, Jane always wore her unloader knee brace.

One day while chatting, I asked her why she wore a knee brace.  Jane replied that sadly, one of her knees was now ‘bone-on-bone’.  Consequently, Jane found walking very painful without her knee brace.  She added that luckily, she finally found pain relief while walking her dog as long as she wore her unloader brace. 

It all started when Jane’s orthopaedic surgeon stated that she needed total knee replacement due to ‘bone-on-bone’ knee pain.  When the surgeon proposed a date for this surgery, she realised that the date for surgery conflicted with a long-planned golfing holiday with her husband.  Since there were no other times available for surgery, her surgeon prescribed an unloader knee brace until her return.

From Jane’s perspective, this was the best treatment ever for her knee pain.  Jane was finally able to walk her dog for kilometres at a time without pain.  She was able to manage without a knee brace in her own house.

The story does not end here.  It only gets even better!

A year later, I saw Jane outside of her house while walking past.  She was not wearing her knee brace.  After a chat, I asked her how her knee was doing.

Jane’s answer took me by complete surprise.  Jane told me that she had cancelled her knee surgery indefinitely.  This was because she no longer needed her knee brace while walking her dog.

Lost for words, I asked, ‘Why not?’

Jane replied that recently, her small dog had run out of the house to chase another dog down the road.  Worried that her dog might get hit by a car and in a hurry to catch up to her dog, Jane forgot to put on her knee brace.  Instead, she ran as quickly as she could to chase down her beloved dog.  When Jane finally did catch up, she was relieved to find her dog safe and well.

On their way back home, Jane noticed something weird.  She was not wearing her unloader knee brace.  Even stranger, Jane had nil knee pain despite running after her dog without her knee brace! 

‘How is this even possible?’, she asked herself.

In Jane’s opinion, her knee cartilage may have regrown due to her wearing an unloader brace daily while walking her dog.  Jane would never have realised that her cartilage had regenerated if her dog hadn’t suddenly run out of their house that day.   This is because normally, Jane would never walk her dog without her knee brace.

Jane joked that her brace must have given her knee a much-needed ‘knee holiday’.

Thanks to Jane’s brace, her knee no longer endured ‘bone-on-bone’ pain while walking her dog.  This led to reduced irritation and inflammation as well as possible cartilage regeneration.

I thought it was fantastic that in lieu of total knee replacement, Jane was prescribed an unloader knee brace.  This knee brace enabled Jane to take long walks with her dog every day without knee pain.  Furthermore, Jane no longer needed her knee brace one year later.

Jane’s knee cartilage may have regrown thanks to the ‘knee holiday’ that her brace offered.  Despite no longer wearing her brace while walking her dog, Jane no longer had any ‘bone-on-bone’ knee pain.

Just as a dog can be a man’s (or a woman’s) best friend, an unloader knee brace may be an OA knee’s best friend.

An unloader knee brace was the only thing that Jane needed for ‘bone-on-bone’ knee pain.  And thanks to her misadventure with her dog, she found out that she no longer needed a knee brace one year later!

After listening to this incredible story, I was happy that Jane was able to defer total knee replacement surgery indefinitely.

Some questions:

What would have happened if Jane had done nothing at all?  In other words, what if Jane was not prescribed an unloader knee brace and had not considered total knee replacement surgery?

I suspect that if Jane had done nothing at all, her knee may have deteriorated even further.

A ‘bad’ knee sometimes degenerates to the point where walking becomes impossible without a cane, walker or wheelchair – until joint replacement.

As such, doing nothing is not usually a good option.  One needs to be proactive in the care of one’s own health including the health of one’s knees.

If one has painful knees, one should first seek out less invasive knee treatments.  This may include an unloader knee brace, physiotherapy, non-load-bearing exercises (e.g. swimming and other aquatic exercises, cycling), a healthier diet, losing weight and/or autologous cartilage transplantation (see link at top).

If conservative treatment(s) are pursued in a timely manner, it may be possible to save a knee joint, hence defer total knee replacement indefinitely.

Finally, what exactly went on inside Jane’s knee while she wore her unloader knee brace??

To try to answer this question, I explored the science behind Jane’s knee recovery.  This is what I found:

The Science Behind Jane’s Knee Recovery  

1-s2.0-S1877065715000561-gr1.jpg

Image of unloader (valgus) knee brace for medial knee OA sourced from:

https://www.sciencedirect.com/science/article/pii/S1877065715000561

Overview

A properly fitted unloader knee brace may help keep a patient on his/her feet while slowing or stopping further ‘bone-on-bone’ deterioration of the knee joint.  This may lead to reduced knee pain and increased mobility.

A fitted unloader brace is designed to alleviate the mechanical strain on the defective load-bearing cartilage.  As such, cartilage regeneration in vivo may occur in some OA patients after wearing an unloader brace for many months.

Whether cartilage regenerates or not is not the biggest issue.  It may even be impossible in most OA knee patients.

A greater concern is whether reduced (or nil) ‘bone-on-bone’ pain and increased mobility results while wearing an unloader knee brace during weight-bearing activity.  If yes, ongoing use of this brace is warranted as long as desired.

Some OA patients may prefer a non-invasive unloader brace over total knee replacement surgery, osteotomy, pain medication including knee injections or doing nothing at all.

Others may not qualify for total knee replacement surgery due to being younger than 50 or older than 80.  As such, patients aged less than 50 with a severely arthritic and painful knee may benefit from an unloader brace.

Patients with unicompartment knee OA* may benefit from unloader braces that may decrease (or eliminate) pain, enhance knee function and perhaps even slow OA progression.

Knee Joint Distraction Therapy

Knee joint distraction therapy involves applying an external force to the knee joint via an unloader knee brace (preferably, not via an invasive external fixation frame).  Such a brace can be adjusted to exert external forces to either the inside or the outside of the knee, depending on which side is affected by OA.

Pain relief and reduced swelling often occur following distraction therapy of the arthritic, load-bearing part of the knee.  This therapy may either shift load-bearing weight from the medial (i.e. inside; valgus) compartment to the lateral (i.e. outside; varus) compartment of the knee, or vice versa (depending on which side is affected by arthritis).

In other words, knee joint distraction therapy via an unloader brace shifts the weight away from the arthritic knee compartment including degenerated cartilage and toward the ‘good’ side of the knee joint.   

Furthermore, an unloader brace may improve the overall alignment of the knee joint.  

Finally, an unloader brace may alleviate the ‘bone-on-bone’ pain in the knee by slightly increasing the gap between the femur bone and tibia bone on the arthritic side of the knee joint.

For example, a knee unloader brace with valgus adjustments may be prescribed for medial unicompartment knee OA.  This may be desirable before considering other more invasive surgical options such as osteotomy or arthroplasty (Ramsey & Russell, 2009).

Summary

In summary, an unloader brace-induced chondrocyte-friendly knee joint may result.  This may lead to reduced or nil pain and swelling, increased mobility and perhaps even cartilage regeneration (Callaghan et al, 2015; Kirane et al; Lafeber et al, 2006; Lee et al, 2017; Mastbergen, 2013; Ornetti et al, 2015; Ramsey & Russell, 2009; Thoumie et al, 2018; Tiku & Sabaawy, 2015; van der Woude et al, 2016a; van der Woude et al, 2016b; van der Woude et al, 2017; Verkerke et al, 2014).

One last question:

Is cartilage regeneration more likely to occur if both:

  • An unloader knee brace is worn; and
  • Autologous cartilage transplantation is done (where appropriate)?

(The latter is discussed here:

Transplantation of One’s Own Knee Cartilage – Is this ‘The Bee’s Knees’ for Painful Knees?)

Unloader Knee Brace Patient Stories

Dermott Brereton 

39945.jpeg

Dermott Brereton 

Source:  https://www.unloader.com.au/knee-pain/dermott-brereton

Former Australian Football League Player, Dermott Brereton (54), endured painful OA in his left knee for more than 30 years after tearing his cartilage during a game in 1984, aged only 19.

Following unsuccessful knee surgery, his injured cartilage had to be removed a year later.  Sadly, Dermott was left with ‘bone-on-bone’ knee pain.  Quoting Dermott,

‘It’s been painful to walk on ever since and can be excruciating when the pain’s most acute.’

Dermott continued,

‘… People ask me what’s it like, ‘bone-on-bone’ [pain] … I describe it as biting on a bit of tin foil.  That’s what it is in between the 2 [bones] of your knee … 

Rather than having invasive total knee replacement surgery, Dermott decided to wear the Unloader One Lite knee brace … and he hasn’t looked back since!

Weighing only 296g and featuring Össur’s 3-Point Leverage System, the Unloader One Lite knee brace is the lightest unloader knee brace currently available.

Dermott has worn this unloader knee brace for several months with significant success.  In his words,

‘… The Unloader [knee brace] … pulls those 2 sensitive points apart …

… I’ve got enough confidence now to take on the [96km Kokoda] track again.  So these days, any sporting activity I take on, I’m wearing the Unloader knee brace …’
‘… I wear the brace when I go on longer walks and play golf and have found that it really reduces the strain and pain in my knee …’

More details are available in the 1-minute YouTube video as well as in the following links:

https://www.unloader.com.au/knee-pain/user-stories

https://www.unloader.com.au/knee-pain/dermott-brereton

Other Unloader Knee Brace Stories

Quoting a 61-year old retired male professional,

‘I have one of these [unloader knee] braces and I wish I had this 3 years ago. I now ride my Trike all over New Zealand.’

For additional positive unloader knee brace stories, see YouTube videos and testimonials by OA patients including by:

  • ‘Tony’, a father of 2 girls;
  • A 45-year old male who enjoys kite surfing;
  • 9 other men including fathers;
  • A female hiker (age unknown);
  • An Asian woman who practices yoga.
  • A female (61); and
  • A knee pain patient (gender unknown).

For ‘Stories From Unloader Brace Users’, click here:

https://www.unloader.com.au/knee-pain/user-stories

Summary

Osteoarthritis knee patients should wear fitted unloader knee braces before contemplating total knee replacement surgery.

One never knows … there may be some life left in many knees, thanks to fitted unloader knee braces.

Key

* Unicompartment knee OA involves degeneration of the knee joint including defective articular cartilage.  The medial part of the knee joint is more commonly affected than the lateral part.

** Mesenchymal stem cells are the progenitor of chondrocytes.  They originate and reside in peri-articular bone marrow and subchondral bone.  Mesenchymal stem cells are also present in cartilage, synovium, synovial fluid, infrapatellar/sub-synovial fat pad and adipose tissue (Mastbergen, 2013; McGonagle et al, 2017).

References

MEDIA

(1A) Global Orthopaedics leader Össur announces AFL Legend Dermott Brereton as ambassador for revolutionary osteoarthritis knee braces – Unloader One Lite. Össur.

https://www.unloader.com.au/knee-pain/user-storieshttps://www.unloader.com.au/knee-pain/dermott-brereton

(1B) Stories From Unloader Brace Users. Össur.

https://www.unloader.com.au/knee-pain/dermott-brereton

(2A) Bedard, Richard. Knee Cartilage Repair: How One Patient Proved His Doctors Wrong. Huffpost (16 Aug 2011).

https://www.huffpost.com/entry/knee-cartilage-repair_n_876946

(2B) Bedard, Richard. Saving My Knees: How I Proved My Doctors Wrong and Beat Chronic Knee Pain. Pages 1-208.

PEER-REVIEWED PAPERS

IS CARTILAGE REGENERATION POSSIBLE IN VIVO?

(1A) Lyu et al. Knee Health Promotion Option for Osteoarthritic Knee: Cartilage Regeneration is Possible, Osteoarthritis – Diagnosis, Treatment and Surgery, Prof. Qian Chen (Ed.) (2012).

ISBN: 978-953-51-0168-0, InTech,

http://www.intechopen.com/books/osteoarthritis-diagnosis-treatment-and-surgery/knee-health-promotion- option-for-osteoarthritic-knee-cartilage-regeneration-is-possible

(1B) Lyu et al. Arthroscopic cartilage regeneration facilitating procedure for osteoarthritic knee. MC Musculoskeletal Disorders (21 Nov 2012); 13: 226.

https://doi.org/10.1186/1471-2474-13-226

https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/1471-2474-13-226

(1C) Other papers and thoughts by Lyu et al on whether cartilage regeneration could occur by itself, and in vivo: 

https://www.researchgate.net/post/Is_it_possible_that_cartilage_regeneration_could_happen_by_itself

(1D) Ding et al. Natural History of Knee Cartilage Defects and Factors Affecting Change. Arch Intern Med (27 March 2006); 166(6): 651-658.

doi 10.1001/archinte.166.6.651

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/410037

JOINT DISTRACTION THERAPY FOR OSTEOARTHRITIS USING UNLOADER KNEE BRACE (NOT INVASIVE EXTERNAL FIXATION FRAME)

(2A) Tiku & Sabaawy. Cartilage regeneration for treatment of osteoarthritis: a paradigm for nonsurgical intervention. Ther Adv Musculoskelet Dis (2015); 7(3): 76-87.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426098/pdf/10.1177_1759720X15576866.pdf

(2B) Callaghan et al. (2015) A randomised trial of a brace for patellofemoral osteoarthritis targeting knee pain and bone marrow lesions. Ann Rheum Dis (16 January 2015); 74(6): 1164–1170.

doi 10.1136/annrheumdis-2014-206376

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771926/

(2C) Lafeber et alUnloading joints to treat osteoarthritis, including joint distraction. Curr Opin Rheumatol (2006); 18(5): 519–525.

https://www.ncbi.nlm.nih.gov/pubmed/16896294

(2D) Verkerke et al. Knee Orthosis for Cartilage Repair. Knee Orthosis for Cartilage Repair (October 2014); 32-33.

doi 10.13140/2.1.2702.6244

https://www.researchgate.net/publication/270879215_Knee_Orthosis_for_Cartilage_Repair

(2E) Ramsey & Russell. Unloader Braces for Medial Compartment Knee Osteoarthritis. Sports Health (Sept 2009); 1(5): 416–426.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445170/

(2F) van der Woude et al. Five-Year Follow-up of Knee Joint Distraction: Clinical Benefit and Cartilaginous Tissue Repair in an Open Uncontrolled Prospective Study. Cartilage (July 2017); 8(3): 263–271.

(2G) van der Woude et al. Knee Joint Distraction Compared to Total Knee Arthroplasty for Treatment of End Stage Osteoarthritis: Simulating Long-Term Outcomes and Cost-Effectiveness. (12 May 2016); 11(5): e0155524.

(2H) van der Woude et al. #885 – Six Weeks of Knee Joint Distraction: Sufficient for Cartilage Tissue Repair. Abstracts / Osteoarthritis and Cartilage 24 (2016); S63eS534

 

https://www.oarsijournal.com/article/S1063-4584(16)00958-4/pdf

(2I) Ornetti et alClinical effectiveness and safety of a distraction-rotation knee brace for medial knee osteoarthritis. Annals of Physical and Rehabilitation Medicine (June 2015); 58(3): 126-131.

(2J) Mastbergen, S. SP0166 Joint Distraction and Cartilage Regeneration – What is the Basis for Structural Repair? Ann Rheum Dis (2013); 72(Suppl 3).http://dx.doi.org/10.1136/annrheumdis-2013-eular.166

https://ard.bmj.com/content/72/Suppl_3/A38.2

 

(2K) McGonagle et al. Native joint-resident mesenchymal stem cells for cartilage repair in osteoarthritis.  (Dec 2017); 13(12): 719-730.

doi 10.1038/nrrheum.2017.182.

https://www.ncbi.nlm.nih.gov/pubmed/29118440

(2L) Centeno, CJ. Can an Aggressive Knee Surgical Implant Regrow Cartilage? Regenexx (5 Sept 2013).

https://www.regenexx.com/blog/regrow-cartilage/

 

(2M) Intema et al. Tissue structure modification in knee osteoarthritis by use of joint distraction: an open 1-year pilot study. Ann Rheum Dis (12 May 2011); 70: 1441–1446.

doi 10.1136/ard.2010.142364

(2N) Wiegant et al. Sustained clinical and structural benefit after joint distraction in the treatment of severe knee osteoarthritis. Osteoarthritis Cartilage (Nov 2013); 21(11): 1660-7.
doi 10.1016/j.joca.2013.08.006.
(2O) Eustice, Carol. Relieve pain and improve stability with an unloader knee brace for osteoarthritis. Braceworks (22 Oct 2018).

https://www.braceworks.ca/2018/11/26/health-tech/relieve-pain-and-improve-stability-with-an-unloader-knee-brace-for-osteoarthritis/

(2P) Mistry et al. An Update on Unloading Knee Braces in the Treatment of Unicompartmental Knee Osteoarthritis from the Last 10 Years: A Literature Review. Surg J (N Y) (2 Jul 2018); 4(3): e110–e118.

 

(2Q) Lee et al. Unloading knee brace is a cost-effective method to bridge and delay surgery in unicompartmental knee arthritis. BMJ Open Sport Exerc Med (31 Jan 2017); 2: e000195.

 

(2R) Thoumie et al. Effect of unloading brace treatment on pain and function in patients with symptomatic knee osteoarthritis: the ROTOR randomized clinical trial. Sci Rep (12 Jul 2018); 8(1): 10519.

doi 10.1038/s41598-018-28782-3

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043544/pdf/41598_2018_Article_28782.pdf 

(2S) Kirane et al. Offloading strategies for knee osteoarthritis. ler magazine (Sept 2010).

https://lermagazine.com/article/offloading-strategies-for-knee-osteoarthritis

OTHER

(3) Vincent et al. The Pathophysiology of Osteoarthritis: A Mechanical Perspective on the Knee Joint. PM R (May 2012); 4(5 Suppl): S3–S9.

doi:10.1016/j.pmrj.2012.01.020.

‘Off-Label’ Use of Epidiolex (Cannabidiol; CBD) and Tilray 2:100 for Pain?

Feature Image of Epidiolex (cannabidiol; CBD) bottles sourced from:

https://www.bloomberg.com/news/photo-essays/2018-10-31/gw-pharmaceuticals-s-epidiolex-cannabis-based-epilepsy-drug

Dear Pain Matters readers,

Epidiolex (Cannabidiol; CBD)

Overview

An oral solution called Epidiolex (cannabidiol; CBD) was approved on 25 June 2018 by the US Food and Drug Administration (FDA).  Made by GW Pharmaceuticals, Epidiolex may be used for the treatment of epileptic seizures in patients with Lennox-Gastaut syndrome and Dravet syndrome aged 2 and above.

Epidiolex is the first FDA-approved drug that is based on a molecule (i.e. CBD) derived from marijuana (in this instance, CBD-rich cannabis).  Contrary to tetrahydrocannabinol (THC) that may lead to a ‘high’, the CBD molecule does not exert psychoactive effects.

For more information about CBD and pain, please visit my blog post called:

Cannabidiol (CBD) – ‘Cannabis With the Fun Bit Taken Out’ – For Severe Chronic Pain

Possible ‘Off-Label’ Use of Epidiolex (Cannabidiol; CBD) for Pain

Given that:

  • Cannabidiol (CBD) may offer pain relief; and
  • Epidiolex virtually is CBD,

‘off-label’ use of Epidiolex for pain may be warranted (Anson, 2018; Urits et al, 2019).

Thus, while specifically approved for the treatment of certain epileptic conditions, ‘off-label’ prescription by doctors for Epidiolex for pain may be possible.

Tilray 2:100

Tilray 2:100 (that is comparable to Epidiolex) is now available in Canada for patients with epilepsy.  Tilray 2:100 offers a target concentration of 100 mg/ml of CBD and 2 mg/ml of THC (Henriques, 2019; Tilray, 2018).

Similar to Epidiolex, ‘off-label’ prescription by doctors for Tilray 2:100 for pain may be warranted.

Summary

You may ask yourself,

‘Why would anyone request an ‘off-label’ prescription for Epidiolex or Tilray 2:100 when one could simply buy CBD for pain online (where legal)?’

According to Kyle Varner, MD, Internal Medicine Specialist in Washington:

‘CBD oil has tremendous therapeutic potential.  Epidiolex is just CBD— but sold at a price tag of over $30,000 per year’ (Tapp, 2019).

The answer is that many CBD products sold online are mislabeled and unregulated.  This may lead to ineffective treatments and/or side effects (Bonn-Miller et al, 2017).

As such, Epidiolex and Tilray 2:100 may be prescribed ‘off-label’ for pain in the US and Canada, respectively (in addition to, or instead of, CBD).

This is great news!  Now there are more treatment options available for pain!

Please forward to anyone who may benefit from this blog post.

Sabina Walker

Blogger, Pain Matters (in WordPress)

REFERENCES

Epidiolex

(1) Urits et al. An Update of Current Cannabis-Based Pharmaceuticals in Pain Medicine. Pain Ther (5 Feb 2019).

doi: 10.1007/s40122-019-0114-4.

https://www.ncbi.nlm.nih.gov/pubmed/30721403

(2) Anson, Pat. FDA Approves First Marijuana-Based Prescription Drug. Pain News Network (25 June 2018).

https://www.painnewsnetwork.org/stories/2018/6/25/fda-approves-first-marijuana-based-prescription-drug

(3) van der Walt, Eddie & Dawson, Rob.America’s First Cannabis-Based Medicine Is Made in England. Bloomberg (31 

https://www.bloomberg.com/news/photo-essays/2018-10-31/gw-pharmaceuticals-s-epidiolex-cannabis-based-epilepsy-drug

(4) FDA. FDA approves first drug comprised of an active ingredient derived from marijuana to treat rare, severe forms of epilepsy. FDA (25 June 2018).

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm611046.htm

(5) Tapp, Fiona. Businesses envision a boom in CBD, the non-intoxicating oil from hemp. Boston Globe (24 Jan 2019).

https://www.bostonglobe.com/news/marijuana/2019/01/24/businesses-envision-boom-cbd-non-intoxicating-oil-from-hemp/TQhuB0EErYvrpNxpTXTXxJ/story.html

Tilray 2:100

(1A) Henriques, Carolina. Tilray Launches New High-CBD Cannabis Oil for Seizure Treatment in Canada. Dravet Syndrome News (29 May 2019).

https://dravetsyndromenews.com/2018/05/29/tilray-launches-new-high-cbd-cannabis-oil-seizure-treatment-canada/

(1B) Tilray Introduces New High-CBD Extract. Tilray (06/19/2018).

https://www.tilray.ca/en/blog/post/tilray-introduces-new-high-cbd-extract/

Labelling Accuracy of Cannabidiol Available Online

(1A) University of Pennsylvania School of Medicine. Nearly 70 percent of cannabidiol extracts sold online are mislabeled, study shows. Science Daily (7 Nov 2017).

https://www.sciencedaily.com/releases/2017/11/171107112244.htm

(1B) Royal Queen Seeds. The Recent Approval of Epidiolex and its Implications. 

https://www.royalqueenseeds.com/blog-the-recent-approval-of-epidiolex-and-its-implications-n1014

(1C) Bonn-Miller et al. Labeling Accuracy of Cannabidiol Extracts Sold Online. JAMA (2017); 318(17): 1708.

doi: 10.1001/jama.2017.11909

https://jamanetwork.com/journals/jama/fullarticle/2661569

The Woman with No Pain

Feature Image of Jo Cameron sourced from:

https://www.abc.net.au/news/2019-03-28/scientists-discover-genetic-mutation-that-blocks-pain/10950380

Dear Pain Matters readers,

Jo Cameron

A Scottish woman named Jo Cameron (71), a retired teacher, has never felt pain, fear nor anxiety.  In her words,

‘I was just a happy soul who didn’t realise there was anything different about me.

Recently, pain geneticists helped unravel the mystery why this was so. They found that Jo was born with 2 genetic mutations.

The first mutation is common and causes decreased FAAH activity.  A second mutation is rare and involves an as-of-yet undiscovered pseudogene dubbed FAAH-OUT that affects FAAH expression (Habib et al, 2019).  (Don’t you just love a scientist’s warped sense of humour?  i.e. FAAH OUT, for ‘far out’??)

Due to these mutations, Jo’s body is constantly flooded with a natural cannabinoid called anandamide.

Jo may have inherited these 2 genetic mutations from her father.  In her words:

‘[He] had little requirement for painkillers’.

Jo found it enlightening that after 65 years, she finally found out why she reacted so differently to certain events than others might.

This was because she feels no pain!

Furthermore, Jo does not feel anxiety, stress, depression nor fear.  Jo has never had a panic attack during a dangerous or scary incident.

In Jo’s words,

I knew that I was happy-go-lucky, but it didn’t dawn on me that I was different … I didn’t know anything strange was going on until I was 65.”

There is a lot of truth to the saying:

‘What you don’t know, you don’t miss.’ 

In Jo’s case, she did not know pain.  Therefore, she did not ‘miss’ pain.

Jo had many injuries throughout her life including cuts, burns, broken bones and numerous surgeries, all without pain.  At times, she would accidentally iron herself.  At other times, she would smell her own burning flesh before noticing that anything was amiss.

The good news is that Jo’s wounds always healed very quickly with very little scarring.

Following complex double hand surgery, her doctor found out that Jo did not require painkillers.  Stunned, he checked her medical history only to learn that she had never requested painkillers.

Jo clarified:

‘If you don’t need [painkillers], you don’t question why you don’t … you are what you are … until someone points it out.’

Referring to a hip replacement surgery, Jo stated (quoting):

‘I didn’t know my hip was gone until it was really gone.  I physically couldn’t walk with my arthritis.’

‘I’d not had a twinge.’

Jo added:

‘It would be nice to have warning when something’s wrong.’

Two years ago, a young driver cut in front of her by mistake, causing Jo’s car to flip onto its roof in a ditch.  Instead of panicking, Jo calmly got out of her car and walked over to comfort the shaking driver.

Many years earlier, Jo found childbirth ‘quite enjoyable really’.  (OMG! Really???)

Jo enjoyed eating hot chili peppers, saying that they left her with a brief ‘pleasant glow’ in her mouth (Habib et al, 2019; Judd, 2019; Sample, 2019).

For more details, please see References that include a 2-minute video called:

Die Frau, die keine Schmerzen fühlt.  [The woman who feels no pain.]  Spiegel Online (29.03.2019).

http://www.spiegel.de/video/seltene-gen-mutation-jo-cameron-fuehlt-keinen-schmerz-video-99026124.html

Ashlyn Blocker

Whilst rare, Jo Cameron is not the only person who can not feel pain.  Amongst others who do not know pain is a teenage girl from Georgia, US, named Ashlyn Blocker.

Ashlyn was diagnosed with congenital insensitivity to pain with reduced ability to sweat.  Gene testing revealed that Ashlyn was born with 2 novel SCN9A (Nav1.7 sodium channel) mutations.

Given that this blog focuses on stories about people living with pain, and not on those who do not know pain, curious readers can find further details about Ashlyn Blocker (whose gene mutations block pain … pardon the pun) in the References below.

 

In closing, wouldn’t it be great if not feeling pain was an option for as long as desired?

Sabina Walker

Blogger, Pain Matters (in WordPress)

REFERENCES

Jo Cameron

Media

(1) Judd, Bridget. Scientists discover genetic mutation that helps block pain and improve healing. ABC News (28 March 2019).

https://www.abc.net.au/news/2019-03-28/scientists-discover-genetic-mutation-that-blocks-pain/10950380 

NB Above link only works if you ‘copy and paste’ manually.

(2) Sample, Ian. Scientists find genetic mutation that makes woman feel no pain. The Guardian (28 March 2019).

https://www.theguardian.com/science/2019/mar/28/scientists-find-genetic-mutation-that-makes-woman-feel-no-pain

Peer-Reviewed Paper

(3) Habib et al. Microdeletion in a FAAH pseudogene identified in a patient with high anandamide concentrations and pain insensitivity. BJA (2019).

doi.org/10.1016/j.bja.2019.02.019

https://bjanaesthesia.org/article/S0007-0912(19)30138-2/fulltext

Video (in German, Subtitled in English)

(4) Spiegel Online. Seltene Genmutation – Die Frau, die keine Schmerzen fühlt. [The Woman Who Feels No Pain.] Spiegel Online (29.03.2019).

http://www.spiegel.de/video/seltene-gen-mutation-jo-cameron-fuehlt-keinen-schmerz-video-99026124.html

Ashlyn Blocker

Media

(1) Agresz, Patrick. The Girl Who Has Never Felt Pain. Patrick’s Case Studies (31/10/2017).

https://patrickscasestudies.wordpress.com/2017/10/31/the-girl-who-lives-without-pain/

(2) Heckert et al. The Hazards of Growing Up Painlessly. The New York Times (15/11/2012).

(3) Associated Press. Rare disease makes girl unable to feel pain. NBC News (11/1/2004).

http://www.nbcnews.com/id/6379795/ns/health-childrens_health/t/rare-disease-makes-girl-unable-feel-pain/#.XKYH0S2B1Z1

Peer-Reviewed Paper

(4) Staud et al. Two Novel Mutations of SCN9A (Nav1.7) are Associated with Partial Congenital Insensitivity to Pain. Eur J Pain (2010);15(3):223–230.

doi:10.1016/j.ejpain.2010.07.003

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2978801/