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 ​ Watch this space for my upcoming book.  This book will be based on my blog, 'Pain Matters'.    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 that offers relaxing, de-stressing photos: https://www.instagram.com/painmatterssw/ I am also on LinkedIn: https://www.linkedin.com/in/sabina-walker-b496429/ 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

Enbrel (Etanercept) for CRPS – Professional Footballer, Nazair Jones, and his CRPS Story

Feature Image of Nazair Jones, Professional Footballer, sourced from:

https://bleacherreport.com/articles/2701835-unable-to-walk-at-16-unc-lineman-naz-jones-is-about-to-get-drafted-into-the-nfl

Dear Pain Matters readers,

Here is a patient story that may inspire, empower and offer hope.

This story is about a footballer named Nazair Jones who developed CRPS at only 15.  Amongst many treatments, Nazair received regular injections of Enbrel (Etanercept) and physiotherapy.  Details follow:

As a teenager, Nazair Jones always enjoyed playing football and basketball.  Unfortunately, his passion for competitive sports led to a number of injuries including torn anterior cruciate ligaments, shoulder surgeries and broken limbs.

On 5 November 2011, Nazair Jones (then 15) woke up to a body inexplicably paralyzed from his waist down.  He could not get out of bed to go to the bathroom.  His body was frozen in agony and he could not move his legs due to excruciating pain.

Quoting Nazair,

‘On a scale of 1 to 10, the pain was a 12.’

Terrified, he yelled to his mom for help.

In Nazair’s words,

 ‘It’s hard to explain…It was a shock…In my head, I’m saying ‘Walk.  Walk!  Why aren’t you walking?’  It was scary.’

Nazair’s mom called an ambulance to take him to Emergency.  He was discharged shortly after receiving an injection for pain.

Sadly, Nazair’s pain came back with a vengeance.  He was given injections including an epidural for pain.  Despite ultrasounds of his legs as well as nerve and blood tests, no one knew why Nazair had severe pain or why he could not walk.

Nazair’s ankle was extremely swollen.  The swelling would switch from one ankle to the other the following morning.  His swollen leg would also sweat profusely even while lying down.

In Nazair’s words,

‘They didn’t know what was wrong with me.  That was the worst part.’

Nazair was finally diagnosed with CRPS in December 2011.  He required a cane, a walker and ultimately a wheelchair for mobility. Doctors were unsure if he’d ever walk again, let alone play football again.

Despite his pain including allodynia* and mobility issues, Nazair never forgot his dream of becoming a professional footballer.

Motivated by his dream, Nazair started daily physiotherapy including walking exercises in the pool and mirror therapy.  Despite pain medication including ibuprofen, he suffered excruciating pain.  It would take Nazair an entire 30 to 60 minutes just to walk around the hospital floor.

Quoting Nazair,

It sounds easy to take a lap, but it was, by far, the worst pain.  You’re trying to get your body to do something—you want it to do it—but it’s just not doing it. You’re forcing yourself to move, and it just hurts. I can’t even explain the hurt. It just hurts … with all of that swelling, that was the most painful part …’

In 2013, Nazair started receiving weekly Enbrel (Etanercept) injections to manage the swelling in his ankles.

The good news is that Nazair was finally able to walk on his own again in May.  Two months later in July, he started playing sport again.

In his words,

‘… I just know I’ve been able to be myself with no pain.(Adelson, 2016; Adelson, 2017; Dunne, 2017; Supportive Care Matters, 2018).

 

Wishing all pain patients inspiration, hope and empowerment

Sabina Walker

Masters Appl. Science (Neuroscience)

Blogger, Pain Matters (in WordPress)

painmatters.wordpress.com

and

Author of soon-to-be published book called Pain Matters 

Twitter

@SabinaWalker18

KEY

* Allodyniis pain caused by a stimulus that is usually not painful.

REFERENCES

(1) Adelson, Andrea. UNC DL Nazair Jones was nearly paralyzed five years ago. ESPN (28 Sept 2016).

https://www.espn.com/college-football/story/_/id/17650219/north-carolina-dl-nazair-jones-was-nearly-paralyzed-five-years-ago

(2) Adelson, Eric. NFL draft prospect Nazair Jones on his rare disease: ‘On a scale of 1 to 10, the pain was a 12.’ Yahoo Sports (7 April 2017).

https://sports.yahoo.com/news/nfl-draft-prospect-nazair-jones-rare-disease-scale-1-10-pain-12-221557965.html

(3) Dunne, Tyler. Unable to Walk at 16, UNC Lineman Naz Jones Is About to Get Drafted into the NFL. Bleacher Report (6 April 2017).

https://bleacherreport.com/articles/2701835-unable-to-walk-at-16-unc-lineman-naz-jones-is-about-to-get-drafted-into-the-nfl

(4) Supportive Care Matters. Nazair Jones Goes from Chronic Disease to NFL Hopeful (2018).

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Surgery to Remove Schwannoma Leads to Relief from Tumour Pain in Face

Feature Image of a woman holding her face in her hands is sourced from:

https://unsplash.com/photos/CCFCMb1Defk

Dear Pain Matters readers,

When severe pain is caused by tumours, benign or cancerous, surgery including stereotactic radiosurgery to remove the tumour may be the most effective way to reduce or eliminate tumour-induced pain.

A Decade of Severe Facial Pain Caused by an Undiagnosed Tumour

Stereotactic Radiosurgery of Schwannoma Leads to Pain Relief

Michelle Ellerbe, married and mother of 2 daughters, suffered a decade of severe facial pain.

Michelle’s excruciating pain started on the right side of her face in 2008 after giving birth to her second child.

In her words,

‘I felt a sharp pain radiate from my right ear to my right nostril … The whole day, the pains got worse. … I went to emergency … They told me I had Bell’s palsy, gave me steroids and sent me home.’

During her next emergency room visit a week later, she undertook numerous tests including MRI, CT scan and blood tests – but still no correct diagnosis.

Despite seeing countless doctors, taking ‘too many pain pills’ (ibuprofen, oxycodone, morphine, methadone and Dilaudid) and antiseizure medication and undergoing multiple surgeries and procedures (e.g. Gamma Knife procedure, nerve blocks), Michelle’s facial pain persisted more than 2 years.

A doctor diagnosed trigeminal neuralgia while another doctor performed a glycerol nerve block, to no avail.  A neurosurgeon performed craniotomy while an oral surgeon extracted all of her teeth on the right side of her mouth, all without success.

In Michelle’s words,

‘I was broken.  Everyone started saying they can’t help me, and kept giving me more medication.  I was taking 22 pills a day to show up at work. … I thought I was going to die from an overdose.’

Then one day, Michelle saw Dr Philip Stieg, a neurosurgeon in New York.  After diagnostic imaging, Dr Stieg found a tumour, specifically, a Schwannoma around her trigeminal nerve.  Usually benign in nature, a Schwannoma is a nerve sheath tumour that develops from the Schwann cell.

Whilst dismissed as ‘calcification’ on an older CT scan dated 2013, this (growing) tumour was (likely) the source of her severe facial pain for a decade.

Stereotactic radiosurgery was done to eliminate the tumour.  After 3 radiation therapy sessions, Michelle reduced her daily intake of pain pills from 22 to 7, and later on, a maximum of 2 pain tablets a day.

Whilst Michelle still has some residual pain due to nerve damage caused by all the past surgeries and procedures, her quality of life is significantly improved.

In Michelle’s words,

‘I’m off all of that medication …this summer, … I will be on a beach or sitting in a park with my family enjoying the breeze pain free!’

For more details, please see:

Michelle Ellerbe’s Story

NewYork-Presbyterian (2019)

https://www.nyp.org/patient-stories/patient-story-michelle-ellerbe

Summary

Tumour facial pain may be effectively treated via surgery including stereotactic radiosurgery to remove the tumour.

 

 

Wishing all pain patients inspiration, hope and empowerment

Sabina Walker

Masters Appl. Science (Neuroscience)

Blogger, Pain Matters (in WordPress)

painmatters.wordpress.com

and

Author of soon-to-be published book called Pain Matters 

Twitter

@SabinaWalker18

 

A SINGLE Perispinal Etanercept Injection by Edward Tobinick MD for Severe Nerve Pain including Sciatica and Post-Stroke Pain (2/2)

Feature Image sourced from:

https://seekingalpha.com/article/3956875-invivos-therapy-verge-becoming-de-facto-treatment-spinal-cord-injury

 

Dear Pain Matters blog readers,

Introduction

Infliximab, Etanercept and other selective anti-TNF drugs are sometimes used to treat:

  • Lumbar radicular pain;
  • Sciatica;
  • Post-stroke pain;
  • Complex regional pain syndrome (CRPS);
  • Rheumatoid arthritis;
  • Crohn’s disease; and
  • Other painful conditions.

This blog post explores the pain-relieving effects of a single perispinal Etanercept injection in certain patients with sciatica, post-stroke pain and other severe nerve pain.

An earlier blog post discussed anti-TNF drugs (Infliximab) for CRPS:

Anti-TNF Drug (Infliximab) Therapy for CRPS and Other Chronic Pain Conditions (1/2)

A Single Perispinal Etanercept Injection for Pain in Back (Sciatica), Neck and after Stroke – 9 Patient Stories

A handful of pain patient stories (N=9) were selected from the Institute of Neurological Recovery’s (INR’s) website (that has over 300 patient videos).  This website also includes media stories, a blog and countless scientific publications by Dr Tobinick and his peers (see References).

https://www.nrimed.com

Please note the following disclaimer quoted from Dr Tobinick’s Patient YouTubes: 

‘Disclaimer: Individual results vary, not all patients respond. Additional doses may be necessary to maintain the clinical response. Treatment for these indications is innovative (“off-label”). The method of off-label treatment utilized is a patented invention of the INR®.’

 

(1) Kerry and Her Single Perispinal Etanercept Injection for Severe Leg and Back Pain

‘Kerry’ (not her real name) had intense right ankle, leg and back pain including burning pain for 6 months nonstop.  She walked very slowly with an abnormal gait to prevent the pain from shooting down her leg.  Her sleep was severely compromised.

Kerry was offered a single dose of perispinal Etanercept by Dr Tobinick at the Institute of Neurological Recovery, Florida, on 11 September 2009.

Kerry was immediately pain free at rest!  When her right leg was gently lifted, there was only a little pain. She said that this was likely due to not doing enough stretching exercises.   Kerry did not have pain in her buttocks nor lower back and her gait was vastly improved.

In Kerry’s words, ‘I feel good!  Thank you.  Yeah, I feel good.’

At her follow-up 2 weeks later on 25/9/2009, Kerry said that she felt excellent.  She slept well and was able to do all her normal activities.

Kerry attributed her complete recovery from pain and mobility to her single dose of Etanercept.

For more details, please view Immediate and sustained relief from severe pain (a 4-minute YouTube dated 25/11/2009 by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=Np62fRdIo1E

 

(2) Ana and Her Single Perispinal Etanercept Injection for Severe Back and Leg Pain

‘Ana’ (not her real name), a woman with a warm Spanish accent, suffered constant severe back and leg pain for 2 years.

Ana’s unrelenting pain affected her mobility and sleep.  Her husband had to help put on her shoes and underwear.  Ana tried different pain medications including Tramadol, Vicodinand Naproxen without success.  Ultimately,Ana lost her job because of her ongoing pain.

Ana booked an appointment with Dr Tobinick at the Institute of Neurological Recovery, Florida, on 4 May 2009. While seated during the examination, Ana’s left leg was gently raised.  This resulted in increased pain in her back that spread down her left leg. It was impossible to lift her other leg due to excruciating pain.

Thereafter, Ana received a single dose of perispinal Etanercept.  Three minutes afterward, Dr Tobinick stated,

‘All right now. … The dose was at 9 minutes after 4, and this … is 3 minutes [later].  What is happening?’

Ana said, ‘I can move my legs!  [She laughs, with tears of joy in her eyes.]  Oh God! Oh God!’

Dr Tobinick asked, ‘Is this different?’

‘Oh yeah!’, she exclaimed.

He continued, ‘When was the last time you felt like this?’

Ana replied, ‘I don’t know, about 2 or 3 years ago.  Oh my God! … I can’t believe this!  Two years of pain … Oh my God!  Wow!  You’ve given my life back!

Dr Tobinick asked, ‘What do you think?’

She tearfully said, ‘Thank you!’

Dr Tobinick continued,

‘How do your legs feel? … Before, it was hurting.’

She happily replied, ‘Oh, thank you … I have legs!’

He added, ‘Can you walk?’

She said, ‘Oh my God!’

Dr Tobinick said, ‘How do you feel?  Let’s go down the hall.’

Ana said, ‘Oh my God! … This is incredible!  Oh God.’

He asked, ‘Did it work?’

She enthusiastically replied, ‘Yes!! … Thank you so much!’

Ana (and her husband) had a follow-up visit with Dr Tobinick a week later on 11 May 2009.

Ana’s husband exclaimed,

‘… This is another person.  That was not her … I got her back! … The smile! … She’s alive! … She’s getting back into the game … She’s moving!’

Ana had another follow-up visit with Dr Tobinick 3 months later on 14 August 2009.

Dr Tobinick asked,

‘What kind of difference has this [single dose of perispinal Etanercept] made for your life?’

Ana replied, ‘Tremendous! … I’m holding my grandson and playing with him … I can have him in my lap and play with him. … And enjoy it!  I wasn’t able to do that before!  I’m doing a lot better!’

Dr Tobinick said, ‘Wonderful!’

‘Thank you, Dr Tobinick!’

‘You’re welcome!’

For more details, please view Immediate relief of 2 years of constant back pain and sciatica (an 8-minute YouTube dated 25/11/2009 by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=vP6Nw1_OGIg

 

(3) Brenda’s Single Perispinal Etanercept Injection Brings Fast Relief from Severe Sciatica

A young woman named ‘Brenda’ (not her real name) had a slipped disc in her 4th vertebra and severe sciatic pain for 5 months since December 2008.  Her gait was affected and she had severe pain from the right side of her lower back and buttocks that spread down both legs.  There was unbearable pain in her right leg down to her toes and less pain in her left leg.

Brenda was given Vicodin, steroids and morphine injections for her pain, to no avail.  When she was rushed to hospital for severe back pain (several times), the neurosurgeon told her that she needed emergency back surgery.

When Brenda went to see Dr Tobinick on 21 April 2009, he confirmed that the pain on the right side of Brenda’s back worsened when her left leg was lifted.  Thereafter, Brenda was offered a single dose of perispinal Etanercept.

Within only 1 minute after her injection, Brenda’s knee no longer hurt!  There was no pain in her back even as she lifted both legs.  When she stood up to walk around, there was nil pain and her gait was normal.

Happy to finally be pain free, she started dancing!

When asked by Dr Tobinick, ‘How much pain do you have?’

She replied, ‘I don’t have any pain!’

He confirmed, ‘Your pain is all gone?’

She answered cheerfully,

‘I’m not in pain!  Nope, I’m not in pain!  Nope! I’m good!  Before, I couldn’t stand on this leg … I feel good!  I feel great!’

For more details, please view Rapid relief after 5 months of severe sciatic pain (a 5-minute YouTube dated 7 Jan 2016 by the Institute of Neurological Recovery, Florida).

https://youtu.be/2K5yLrJSq0A

https://www.nrimed.com/videos-by-category/back-neck-pain/

 

(4) Tim’s Single Perispinal Etanercept Injection Offers Relief from Sciatica in Minutes

‘Tim’ (not his real name) went to see Dr Tobinick on 4 April 2007 for severe sciatica.  The intense pain was constant and unbearable for 3 weeks and affected his work, quality of life and sleep.  He had pain in his back and buttocks that extended down his left leg to his calf.

In Tim’s words, ‘It feels like somebody took a baseball bat and hit my leg.’

The pain increased in Tim’s left (not right) leg when Dr Tobinickgently moved his right leg.  Tim’s pain was more intense when seated and it lessened when he stood up.  He was able to walk ‘with a slight limp but real slow … real gently’.

Tim had pain relief within a 1 minute after Dr Tobinickinjected Etanercept perispinally.  

In response to Dr Tobinick’s question about how he was feeling right after the injection, Tim replied,

[The pain] feels kind of pulsating right now … down my leg.  It’s not a constant pain like it was.’

Dr Tobinick replied,

‘… So [the pain has] changed in character a little bit … already’

‘Correct,’ Tim replied.  ‘I feel it in my butt still but not down the leg.’

Dr Tobinick confirmed, ‘But you feel it in your lower back and in your butt?’ 

‘Correct.’

Dr Tobinick continued, ‘But you’re starting to feel a little bit more comfortable … in general?’

‘Yeah…yes!’

 ‘… And your leg?’

‘It’s a miracle.  It’s amazing.’

‘You’re walking a lot faster … Wow!’

Tim replied, ‘Yeah I’m loving this stuff.  Once again, it worked!’

Dr Tobinick phoned Tim 3 months later on 3 July 2007 to follow up.

‘I’m wondering now how you’re feeling?’

Tim replied, ‘I am feeling like a million bucks, doctor!’

Pleased for his patient, Dr Tobinick said, ‘I love it!’

Tim continued,

‘… By the time I got back to UCLA that day [of the perispinal Etanercept injection], I was better … You would have never known I had a back problem! …’

Dr Tobinick said, ‘That’s fantastic! … You know, you had some very interesting findings. That finding of moving your right leg, making your left leg hurt, that’s a very specific finding that indicates inflammation of the nerve root.  And so, it was clear what we were treating.  And that, of course, got better, very quickly … So, it’s very interesting, scientifically … You’re better, and you didn’t have to have surgery!’

Tim replied, ‘Yes, I am too. That’s wonderful stuff you got there.’

For more details, please view Improvement within minutes in sciatica (an 8-min YouTube dated 12 Nov 2009 by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=xyfSgMoNsKY#action=share

https://www.nrimed.com/videos-by-category/back-neck-pain/

 

(5) Gerry’s Single Perispinal Etanercept Injection Offers Pain Relief in Minutes after 5 Years of Sciatica

‘Gerry’ (not his real name) suffered from sciatic pain for 5 years nonstop.  In his words, he had pain ‘every day, all day’.  Gerry tried different treatments including chiropractic and decompression treatments.

Dr Tobinick treated Gerry for sciatica via a single dose of perispinal Etanercept.  It took ‘just a few minutes’ for the Etanercept to offer lasting pain relief (as confirmed at the follow-up 2 weeks later on 9 July 2009).

For more details, please view Relief in minutes after 5 years of constant pain (a 1-min YouTube dated 6 January 2016 by the Institute of Neurological Recovery, Florida).

https://youtu.be/d0WRKmrE9Bw

https://www.nrimed.com/videos-by-category/back-neck-pain/

 

(6) Mirabelle has Improved Hand Strength After A Single Dose of Perispinal Etanercept

‘Mirabelle’ (not her real name) suffered ongoing and never-ending severe pain for 15 years.  Walking and standing up caused pain in her hips and low back.  Mirabelle had pain in both hands.  Her left hand was weaker and more painful than her right hand ever since her ski accident in 1986 or 1988.

Mirabelle was seen by nearly 30 different doctors including 10 or 11 pain specialists.

During her appointment with Dr Tobinick, Mirabelle received asingle dose of perispinal Etanercept.

When followed up 2 weeks later on 24 October 2007, Mirabelle had significantly more strength in both hands, compared to before Etanercept injection.  Her hands no longer had ‘that arthritic feeling’ (that she felt for weeks).

While there was some residual muscular pain, Mirabelle no longer had neck pain, post-Etanercept.

For more details, please view Hand improvement after treatment at the INR in 2007 (a 6-min YouTube dated 6 January 2016 by the Institute of Neurological Recovery, Florida).

https://youtu.be/6-rXP4ZEDXk

https://www.nrimed.com/videos-by-category/back-neck-pain/

 

(7) Caroline’s Sole Perispinal Etanercept Injection Relieves 25-Year Pain in 10 Minutes

At follow-up on 15 July 2009, 2 weeks after ‘Caroline’s’ (not her real name) single injection of perispinal Etanercept, Dr Tobinick asked,

‘What happened [after this injection]?’

Caroline replied, ‘… I got up … I felt … so much taller … I felt … this wonderful feeling … I stood up and it was just great … I was elated because Ihave been in pain for sooo long … [The pain was] like a knife going through you …’

Dr Tobinick continued, ‘And how long did you have the pain?’

Caroline answered, ‘Oh, I’ve had the pain … I started maybe 25 years ago …’

He asked, ‘How long?’

Caroline clarified, ‘This has been the worst, these last few years. … The last 4 years.’

Dr Tobinick asked, ‘Have you had it every day?’

She replied, ‘Just about!’

He continued, ‘Just about every day? And how many hours a day were you having the pain before you came in?’

Caroline answered, ‘Oh gosh, very, very often.’

He clarified, ‘So most of the day? …’

Caroline stated, ‘And this time when I had that injection, it’s unbelievable.’

‘How long did it take to work?’ he asked.

‘10 minutes!’

‘10 minutes,’ he confirmed.

She said, ‘Unbelievable.  It is.  It really is!

Dr Tobinick asked, ‘Has anything like this happened at all in the last few years?’   

‘No.  [Not] at all,’ she replied.  ‘It’s incredible.  I really did not believe this could happen …’

Dr Tobinick asked, ‘Have you had to take any pain medicine in the last 2 weeks?’

‘No,’ she answered.

‘Not a single … no pills?  Nothing?’ he confirmed.

‘Nothing!

‘Ok,’ he said.

‘It’s really great! …’, she said.  ‘…I’ve had … surgery … I got worse.’

Dr Tobinick asked, ‘You had surgery for your back?’

‘Yes!’

‘And you got worse?’

‘And I got worse … And yet I come to this, and it’s great! … It’s the greatest thing that’s come along. …’

‘… Alright, thank you very much,’ Dr Tobinick said.

For more details, please view the 4-minute video called Rapid pain relief after 25 years of pain July 15, 2009 (a 4-min YouTube dated 6 January 2016 by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=3ClVijm0MAA&feature=youtu.be&app=desktop

 

(8) Lola and Her Single Perispinal Etanercept Injection for Post-Stroke Pain

‘Lola’ (not her real name) suffered ongoing severe pain for almost 2 years after a stroke on 27 November 2016.  Her excruciating pain (10/10) affected the entire left side of her body including arm, breast, ribs, hip and leg.  She rarely moved her left arm nor left foot due to extreme pain.  Walking was next to impossible as her pain would only intensify with activity.

Lola tried Baclofen and Gabapentin for pain without success.

Lola booked an appointment with Dr Edward Tobinick on 20 November 2018, almost 2 years after her stroke.  After an assessment, Lola received a single perispinal Etanercept injection.

Lola enjoyed immediate pain reliefand improved left arm mobility within 10 minutes after her injection.  Her pain levels in her chest dropped to 6/10.  Lola was finally able to move her left arm without pain.  The spasticity in her left arm was also reduced.

Lola no longer had hip pain (that was 10/10 prior to injection).  The pain in her left leg and foot was gone, she was able to move her left foot for first time in 2 years and her balance was significantly improved.  Lola finally took her first steps without pain.

Overall, Lola enjoyed significantly less pain and enhanced mobility thanks to her single Etanercept injection.

According to her daughter, there was a new look in Lola’s eyes.

When Dr Tobinick asked, ‘Are you happy you’ve come?’,

Lola replied, ‘I’m very happy … And I hope I give hope to other patients too!’

For further details, please view Immediate improvement in chronic post-stroke pain nearly 2 years after stroke (a 3-minute YouTube dated 28/11/2018 by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=FLZhVil56qM

 

(9) Debbie and Her Single Perispinal Etanercept Injection for Post-Stroke Pain

‘Debbie’ (not her real name) had a massive stroke that led to mobility issues and severe, unrelenting pain in her neck, both shoulders and upper left arm.  While strong pain medication reduced some of her pain, it did not eliminate it.

Debbie was unable to get out of a chair without assistance and she required a wheelchair during shopping.  She had significant loss of function in her left hand and arm as well as loss of sensation in the left side of her body including face, hand and leg.

Debbie had her first appointment with Dr Tobinick 3 years after her stroke on 29 February 2012.

Dr Tobinick asked, ‘Do you have pain every day?’

‘Yes, every minute of every day, I’ve got pain.’

Dr Tobinick confirmed,

‘Every minute of every day?  You have constant pain?’

‘Yes’, she replied.

‘Even now, you’re in pain?’, he asked.

‘Yes, I am…’

Within only minutes after a single perispinal Etanercept injection, Debbie had significantly less pain and restored sensation to the left side of her body including face, hand and leg. The motor skills in her left hand were dramatically enhanced and she was finally able to get out of a chair without assistance.

‘How different is that from before?’

‘I can’t believe it.  It’s a miracle!’, she said with a big smile.  It’ll change my life totally!’

For further details, please view Rapid improvement in chronic post-stroke pain 3 years after stroke (a 4-minute YouTube by the Institute of Neurological Recovery, Florida).

https://www.youtube.com/watch?v=ic-6tk7MF5Y

 

Perispinal Etanercept Injections for Pain due to Bone Metastasis – Case Study (N=2)

Two patients received perispinal Etanercept injections near the site of bone metastases for pain.  This treatment led to (quoting) rapid, substantial, and sustained relief of chronic refractory pain at the treatment site’ in both patients (Tobinick, 2003).

 

Perispinal Etanercept Injections for Chronic Back and/or Neck Disc-Related Pain – A Study (N=143)

A study was done involving perispinal Etanercept injections into the spine of 143 patients with chronic back and/or neck disc-related pain.  This treatment led to significant reductions in pain, sensory dysfunction and weakness (Tobinick and Davoodifar, 2004).

 

An Australian Trial involving Perispinal Etanercept Injections for Stroke

Inspired by the outstanding results achieved after a single perispinal Etanercept injection by Dr Tobinick at the Institute of Neurological Recovery (INR), Florida, a clinical trial is now underway for stroke patients in Australia.

Quoting,

‘The project will enable more Australians of working age who have had a stroke to access new … treatment options to aid their recovery.’

 

While results are not yet finalised, further details are here:

 

  • $1 million to support the rehabilitation of stroke survivors (6 October 2018)

https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/media/1-million-to-support-the-rehabilitation-of-stroke-survivors            

http://www.nrimed.com/wp-content/uploads/GH134.pdf

 

  • Australian Government designates funds to advance Perispinal Etanercept stroke research in Australia (8 October 2018)

http://www.strokebreakthrough.com/blog-posts/uncategorized/australian-government-designates-funds-to-advance-perispinal-etanercept-stroke-research-in-australia/

Summary

More research into anti-TNF drug treatment for CRPS, sciatica, post-stroke pain and other nerve pain conditions is encouraged.  Such studies should confirm whether localised TNF levels are elevated in CRPS-affected limbs and other pain-affected areas in the first place.  If yes, analysis is necessary whether any anti-TNF drug treatment leads to a significant reduction in these elevated localised TNF levels, and if yes, whether this is also accompanied by reduced pain (etc).  Induced skin blisters or skin biopsies may be necessary to confirm localised TNF levels in CRPS-affected limbs and other pain-affected regions, both ‘before’ and ‘after’ anti-TNF drug treatment.

NOTE:  If localised TNF levels are already low to begin with (prior to anti-TNF drug treatment), anti-TNF drug treatment is (likely) not indicated.

Possible adverse effects also need to be considered prior to anti-TNF drug treatment.  Medical supervision is always advised.

 

Wishing all pain patients less pain,

Sabina Walker

Masters Appl. Science (Neuroscience)

Blogger, Pain Matters (in WordPress)

painmatters.wordpress.com

and

Author of soon-to-be published book called Pain Matters 

Twitter

@SabinaWalker18

 

For more information about Dr Tobinick’s treatment involving perispinal Etanercept for nerve pain, please see:

https://www.nrimed.com

Patient videos (N=307) by the Institute of Neurological Recovery, Florida:

https://www.nrimed.com/videos-by-category/

https://www.nrimed.com/videos-by-category/back-neck-pain/

https://www.nrimed.com/videos-by-category/stroke-pain-videos/

Scientific publications by Dr Tobinick and his peers:

https://www.nrimed.com/inr-scientific-publications/

Media stories:

http://www.nrimed.com/about/media-stories/

Blog by the Institute of Neurological Recovery, Florida:

https://www.nrimed.com/blog/

Please note that treatment involving perispinal Etanercept injection is protected by multiple patents owned by Edward Tobinick MD including U.S. patents 6 015 557; 6 177 077; 6 419 944; 6 537 549 and Australian patent 758 523 (Tobinick and Davoodifar, 2004).

 

PS YOU DON’T HAVE TO READ THE FOLLOWING UNLESS YOU ARE INTERESTED IN THE UNDERLYING SCIENCE 

POSSIBLE MECHANISMS OF ANTI-TNF DRUG THERAPY IN CRPS NERVE PAIN

Anti-TNF drugs (e.g. InfliximabEtanercept) are TNF monoclonal antibodies that selectively block TNF, hence limiting the pro-inflammatory process.

The reduction of TNF and other pro-inflammatory mediators (via anti-TNF drug therapy or otherwise) may alleviate certain painful symptoms in CRPS, sciatica, post-stroke pain and other severe nerve pain conditions.

Ongoing trials are warranted including analysis of side effects.

For further details, please refer to all papers by Edward Tobinick MD and his peers.

Other papers are also available in the References including 24-page Review Paper by Sabina Walker and Prof. Peter Drummond. In particular, please see pages 1790 – 1791, plus related references on page 1804 (included below).

 

REFERENCES

Selected Scientific Publications by Dr Tobinick and His Peers

https://www.nrimed.com/inr-scientific-publications/

(1A) Ignatowski TA et al. Perispinal Etanercept for Post-Stroke Neurological and Cognitive Dysfunction: Scientific Rationale and Current Evidence.CNS Drugs(August 2014); 28(8): 679-697.

https://www.strokebreakthrough.com/wp-content/uploads/PSE.post-stroke.Scientific-Rationale.August2014.pdf

(1B) Tobinick E and Davoodifar S.Efficacy of etanercept delivered by perispinal administration for chronic back and/or neck disc-related pain: a study of clinical observations in 143 patients. Davoodifar S. Curr Med Res Opin(July 2004); 20(7): 1075-85.

https://www.ncbi.nlm.nih.gov/pubmed/15265252

(1C) Tobinick, Edward et al. Immediate Neurological Recovery Following Perispinal Etanercept Years After Brain InjuryClin Drug Investig(May 2014); 34(5): 361-6.

https://www.ncbi.nlm.nih.gov/pubmed/24647830

(1D) Tobinick, Edward et al.On Overcoming Barriers to Application of Neuroinflammation Research. In: Abreu GEA, ed. Mechanisms of Neuroinflammation: InTechOpen; 2017.

https://www.nrimed.com/wp-content/uploads/Chapter7.overcoming.barriers.pdf

(1E) Tobinick, Edward. Perispinal Delivery of CNS Drugs. CNS Drugs (2016); 30(6): 469-80.

https://www.ncbi.nlm.nih.gov/pubmed/27120182

(1F) Tobinick, Edward. Perispinal etanercept advances as a neurotherapeutic.Expert Review of Neurotherapeutics (2018); 1-3.

https://www.nrimed.com/wp-content/uploads/Perispinal-etanercept-advances-as-a-neurotherapeutic-1.pdf

(1G) Tobinick, Edward. Perispinal etanercept: a new therapeutic paradigm in neurology.

Expert Review of Neurotherapeutics (June 2010); 10(6): 985-1002.

https://www.strokebreakthrough.com/wp-content/uploads/PSE.ERN2_2.pdf

(1H) Tobinick, Edward. Perispinal etanercept for neuroinflammatory disorders.Drug Discovery Today(Feb 2009); 14(3-4): 168-77.

https://www.ncbi.nlm.nih.gov/pubmed/19027875

(1I) Tobinick, Edward et al.Perispinal Etanercept for Traumatic Brain Injury.Chapter 7, pp. 109-29, in New Therapeutics for Traumatic Brain Injury, Cambridge, Mass.: Academic Press. 2017.

https://www.sciencedirect.com/science/article/pii/B9780128026861000079

(1J) Tobinick, Edward et al.Rapid intracerebroventricular delivery of Cu-DOTA-etanercept after peripheral administration demonstrated by PET imagingBMC Res Notes(27 Feb 2009); 2: 28.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2651903/pdf/1756-0500-2-28.pdf

(1K) Tobinick, Edward L. Targeted etanercept for treatment-refractory pain due to bone metastasis: two case reports. Clinical Therapeutics. (Aug 2003); 25(8): 2279-88.

https://www.ncbi.nlm.nih.gov/pubmed/14512134

(1L) Tuttolomondo et al.Studies of Selective TNF Inhibitors in the Treatment of Brain Injury from Stroke and Trauma: A Review of Evidence to Date. Drug Design, Development and Therapy(Nov 2014); 8: 2221-2239.

https://www.ncbi.nlm.nih.gov/pubmed/25422582

Other Scientific Publications 

(2) Karppinen et al; Tumor necrosis factor-alpha monoclonal antibody, infliximab, used to manage severe sciatica. Spine 2003;28:750–4.

(3) Manning; New and emerging pharmacological targets for neuropathic pain. Curr Pain Headache Rep 2004;8:192–8.

(4) Korhonen et al; The treatment of disc-herniation-induced sciatica with infliximab: One-year follow-up results of FIRST II, a randomized controlled trial. Spine 2006;31:2759–66.

(5) Burnett, Day; Recent advancements in the treatment of lumbar radicular pain. Curr Opin Anaesthesiol 2008;21:452–6.

(6) Cohen et al; Randomized, double-blind, placebo-controlled, dose-response, and preclinical safety study of transforaminal epidural etanercept for the treatment of sciatica. Anesthesiology 2009;110:1116–26.

(7) Lipsky et al; Infliximab and methotrexate in the treatment of rheumatoid arthritis. Anti-tumor necrosis factor trial in rheumatoid arthritis with concomitant therapy study group. N Engl J Med 2000;343:1594–602.

(8) Emery, Buch; Treating rheumatoid arthritis with tumor necrosis factor alpha blockade. BMJ 2002; 234:212–213.

(9) Blam et al; Integrating anti-tumor necrosis factor in inflammatory bowel disease: current and future perspectives. Am J Gastroenterol 2001;96:1977–1997.

Scientific Publication by Sabina Walker (Blogger of Pain Matters) and Professor Peter Drummond

(10) 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), 1784–1807.

In particular, please refer to pages 1790 – 1791, plus related references on page 1804 (also listed above).

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2011.01273.x/abstract

Can Aromatase Inhibitors and/or Surgery 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; Hofmann-Werther)

Isn’t this exciting?

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

 

Wishing all pain patients inspiration, hope and empowerment,

Sabina Walker

PS From a patient’s perspective, Gabrielle Jackson’ book called Pain and Prejudice offers enormous insight into endometriosis (Jackson, 2019).

 

 

Sabina Walker, Masters Appl. Science (Neuroscience)

Blogger of Pain Matters (in WordPress)

painmatters.wordpress.com

and

Author of soon-to-be published book called Pain Matters 

Twitter

@SabinaWalker18

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

(5) Hofmann-Werther, Amelie. Chronic pelvic pain and endometriosis. Middle East Medical.

https://www.middleeastmedicalportal.com/chronic-pelvic-pain-and-endometriosis/

BOOK

(1) Jackson, Gabrielle. Pain and Prejudice – A Call to Arms for Women and their Bodies. Allen & Unwin (2019).

ISBN 978 1 76052 909 3

https://www.allenandunwin.com/browse/books/general-books/health-fitness/Pain-and-Prejudice-Gabrielle-Jackson-9781760529093

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

 

 

 

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