40. Chronic Neuropathic Pain (1): Sudden Onset

[Numbers in square brackets refer to posts listed on the right at the Home/Archives page.]

On that fateful summer day in 2004, many hours after the biopsy operation on my spinal cord tumour [01], I first woke from anaesthetics in the evening but only briefly; still sleepy. Vaguely, I noticed my younger sister and my two friends standing at the end of the bed but I could hardly breathe or talk. In my half asleep state, I felt tightness around my lower chest wall, especially on the left, as if someone had wrapped it around with a heavy metal band.

            A Tight Band Around Lower Chest Wall

     Ouch…..!  Ouch….!
     Where has this broad metal band come from —
     Wrapping tightly around my lower chest wall, tying me to the bed?                 
     Who has put it there? Why?                             
     To stop me moving?
     To stop me breathing?
     To stop me speaking?
     Please remove it!
     Please let me breathe!
     Please let me sleep!

I fell asleep after speaking to my sister and two friends, with difficulty and only briefly. As I was falling asleep, I felt my legs becoming heavier and heavier. I was later woken by a nurse (M) who apparently had been turning me every hour or so while I slept. Later in the night, I told him that I could not move my legs; I could not feel my left leg; but my right leg was very painful. He told me that he would report it to the neurosurgeon. Later, another nurse (senior) came in to give me, or to increase the dosage of the intravenous desthemetisone (an anti-swelling steroid), and she told me about it. I asked for the time; it was about 10 p.m. I continued to sleep and felt being turned over a few times throughout the night.

When I finally woke up fully, it must be morning: there was bright sunlight outside the window and I heard trolleys being pushed along the corridor.  I found myself in a single room (in a surgical ward), facing a blank wall with no clock. I still felt a tight painful grip around my lower chest wall.  When I tried to turn to lie on my left to relieve the acute pain in the right buttock, I noticed my lower body did not move! I still could not move my legs!  When I touched my left leg, I could not feel anything! In sharp contrast, when I touched my right leg, I felt such  excruciating pain!  All my right side, from both the lower chest wall and lower back down to the toes was extremely hypersensitive to touch! 

          My Legs: Identical Twins No More [03]

     Drastically, overnight,
     my two legs have stopped being identical twins.
     They have stopped talking to each other.
     Right leg extremely hypersensitive to touch:
          millions of sharp needles
          pricking at my sensitive nerves.
     Left leg completely numb to touch.

In addition,I felt severe pains and strange sensations in my whole lower body that I had never experienced before: there were ‘constant activities’ inside both legs and buttocks: 

      Soundless and Invisible Fire Crackers  [07]

     Many long strings of fire crackers
     bursting and burning
     rapidly but incessantly
     up and down, inside my legs,
     from toes to buttocks,
     making crackling sounds
          I cannot hear;
     giving out hot bright sparks
          I cannot see.

I treated these completely unusual pains and symptoms as post-operative and believed that they were only temporary. I remembered back in 1989, a right-knee arthroscopy left me with temporary discomfort in my right leg for about a week, especially my calf: stiff, heavy, as if I had been standing on my feet from morning to night without resting, which were relieved by gliding the knee up and down while in lying or sitting position. However, these pains and sensations I was experiencing now were completely different.

I would never have imagined that these conditions would be permanent, and that I would become a permanent wheelchair user and a permanent sufferer of chronic, acute neuropathic pain for the rest of my life, as a result of a ‘simple’ biopsy operation on my spinal cord tumour [01], performed by an eager neurosurgeon. 

     Sudden Onset of Chronic Neuropathic Pain
                    (posted on Jan 7, 2015 [03])

    Many long hours after the biopsy surgery,
I wake from anaesthetics—
my entire body wrapped in strange new pain:        

    A tight broad metal band
corsets my lower chest wall—
I can hardly breathe;

    My lower body crackles, crunches
and bursts with sensation—
if only I could stop them.

    My two legs have stopped being identical twins:
right leg is hypersensitive to the gentlest touch;
the left is completely numb.
.

 

 

 

 

.
.

A sudden onset of permanent disability [02] and chronic neuropathic pain [03], and an irreversibly changed life style imposed on me [38], putting an abrupt end to my academic career [39]. Such multiple destruction and suffering for nearly 15 years now after a ‘simple’ biopsy operation! What happened in the operation?  Hopefully, it has never happened and will never happen to anyone else.
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NEXT  POST:  CHRONIC NEUROPATHIC PAIN (2),  NOV 30, 2018
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Jacek_Malczewski_-_Rekonwalescentka.jpg ‎(800 × 600 pixels, file size: 162 KB, MIME type: image/jpeg) (Jacek Malczewski – Convalescent Woman (1882)), posted by Ablakok, 2017. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At  https://commons.wikimedia.org/wiki/File:Jacek_Malczewski_-_Rekonwalescentka.jpg

An example of a person in Pinel restraints, by James Heilman, MD, 2017.This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. At https://commons.wikimedia.org/wiki/File:PinelRestaint.jpg

Firecrackers in action in Chinese New Year celebration. Photo by Dr. LEE Sao Bing, who is the Medical Director and Principal Surgeon of Shinagawa LASIK & Eye Centre, Singapore. Photo taken from his personal blog at:  https://drleesb.wordpress.com/2012/01/24/firecrackers-new-year/

Bonfire. Photo from English Wikipedia, 8 September 2004 by Fir0002. This file is liscensed under CC AS-A 3.0Unported License.  At http://commons.wikimedia.org/wiki/File:Bonfire4.jpg

Feux d’artifices rouges, 2008.  Author unknown.  Source:  http://www.photos-libres-de-droits-gratuites.com/photos/Artifices/feux-artifices-pldg007.jpg .  This file is licensed under the Creative Commons Attribution-Share Alike 2.0 France license. At  https://commons.wikimedia.org/wiki/File:Feux-artifices.jpg

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38. My Irreversibly Changed Life (1): Managing Disability, Chronic Neuropathic Pain, Spasm, Illness

This is an introduction to the topics I will be writing about in more detail, to share. [Numbers in square brackets refer to the posts listed on the right and on the Archives/ Home Page.]

An Irreversibly and Drastically Changed Life

Back in 2004, a ‘simple’ biopsy operation of an accidentally MRI-detected spinal cord tumour [01] performed by an eager neurosurgeon unexpectedly resulted in ‘incomplete paraplegia’ [02], making me permanently ‘wheelchair bound’ [02, 10.]. It also resulted in  the sudden onset of frequently excruciating chronic neuropathic pain [03] and the sudden onset of spasm on the left side of my body [04].

An irreversibly, drastically changed life with a colossal and complex condition to manage: permanent disability, chronic neuropathic pain, spasm, cancer. Forced retirement with no regular income against huge expenses. House bound.

I was suddenly plunged into a completely new, unknown world in which I must learn to survive, to cope with, to manage, to transcend, to excel [32, 35]. It has been a steep learning curve and a long and challenging journey.

Spinal Cord Tumour

An Astrocytoma, Grade II, in my spinal cord: growing slowly,
not operational, not removable, not treatable, incurable! [01]
A time-bomb ticking.
“Spinal cord tumour patients live very long!”, said the Oncologist.
Which means I am on a long haul with prolonged suffering!
Yes, it has been 14 and a half years now!  How much longer?

Chronic Neuropathic Pain

After I eventually woke up from the anesthetics for the biopsy operation on that fateful day in February of 2004, I felt strange new sensations in my lower body [03]! Constant busting, scrunching, crackling, flickering, sparkling inside my whole lower body: buttocks [16], thighs [04, 07, 12, 27], especially calves and feet [07, 08, 15, 21]. I asked the Neurosurgeon what it was; he said he didn’t know. I later learned from a social worker working with spinal injury patients that it is incurable chronic neuropathic pain! So excruciating, almost unbearable! Eventually, the pain and sensations extended slowly from my lower body [12, 13, 15, 16, 21, 24, 27] upwards towards the upper body [17, 19, 24, 26, 33]. Fourteen and a half years later, it has now reached my neck and shoulders [26], arms [33], hands, fingertips. Chronic pain all over my body. [13, 20, 23, 25, 26, 34]

Pain management immediately after the biopsy surgery merely involved a daily intake of 8 Panadol tablets, prescribed by the neurosurgeon, which was absolutely useless! Later, an initially low dosage of Gabapentin, an anti-convulsion drug found to be useful for neuropathic pain, was prescribed by the rehabilitation specialist. It didn’t always help! Eventually, I have developed my own pain management approach and strategies.

Spasm

Spasm started on the left side of the body 3 days after the biopsy operation [04] and later extended to the right side [28]. Sometimes, gentle and quiet; sometimes, strong and violent. As if manipulated by an invisible puppeteer [06], who likes to play tricks on me! [14, 22, 28]

Disability

I had to spend nearly 3 months in rehabilitation. Somehow, I couldn’t get into the spinal injury department. I was transferred from the surgery ward in the hospital I walked in to a rehab-geriatric ward in another hospital, from which I wheeled home [02]. There, the rehabilitation specialist, physiotherapists, occupational therapists, and social worker  didn’t believe that I would ever stand or walk again and therefore had only the sole aim of training me to lead my life as a ‘competent disabled’, using my hands to wheel myself around and to lift and move my body in self transfers [22] between wheelchair and bed, toilet, shower commode, or another seat (if safe).

I proved them wrong! However,  ….

Managing My Chronic Neuropathic Pain, Disability, Spasm, Illness, Social Isolation.

Not only do I have to cope with and manage my chronic neuropathic pain, spasm and illness, but I also have to live my remaining life as a disabled in a house not built for a wheelchair user [18]. The permanent loss of the freedom of mobility is a great physical inconvenience in a world exclusively designed and built predominantly for walkers. Greater still is the psychological loss of independence: having to depend on carers and helpers for essential assistance, resulting in the loss of privacy.

Chronic neuropathic pain, spasm, illness, disability, dependence, old age: all add up together equals to social isolation. [11, 30.2, 31]

Facing all my difficulties, problems, challenges up front [35, 36], I have developed, over the years, practices and strategies to cope with my multiple impediment, but it doesn’t get any easier as I age.

Sharing and Exchanging

I now share these practices and strategies here with fellow wheelchair users, chronic neuropathic pain sufferers, care providers, healthcare practitioners, pain management professionals and practitioners, physiotherapists, other medical professionals, and anyone interested in knowing how one person manages her chronic pain, disability, illness, and her unexpectedly, permanently changed lifestyle.

Your feedback, comments, exchanges will be most welcome.

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NEXT POST:  Last Walks, Oct 31, 2018
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Hawaii Volcanoes National Park, USA, new lava flow near the Royal Gardens subdivision. by Brian W. Schaller, 2007.  This work is licensed under the Creative Commons ‘Attribution-NonCommercial-ShareAlike 3.0’ License: https://creativecommons.org/licenses/by-nc-sa/3.0/, at https://commons.wikimedia.org/wiki/File:A204,_Hawaii_Volcanoes_National_Park,_USA,_new_lava_flow,_2007.JPG

Trail on a mountain, France. By Tiia Monto, 2015. This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. at https://commons.wikimedia.org/wiki/File:Mountain_trail_in_France.jpg 

Hiking trail Knight’ Path over the Czantoria Wielka, by Pudelek (Marcin Szala), 2014. This file is licensed under the Creative Commons Attribution-Share Alike 4.0 International license. File:Slezské Beskydy – Rytířská stezka (cesta Nýdek – Velká Čantoryje).JPG , at   https://commons.wikimedia.org/wiki/File:Slezsk%C3%A9_Beskydy_-_Ryt%C3%AD%C5%99sk%C3%A1_stezka_(cesta_N%C3%BDdek_-_Velk%C3%A1_%C4%8Cantoryje).JPG


 

36. Metaphorising My Pain


 

Reproduced from Pulse – Voices from the heart of medicine (publishing personal accounts of illness and healing, fostering the humanistic practice of medicine, and encouraging healthcare advocacy), in their monthly More Voices series (short nonfiction prose pieces of 40 to 400 words on a healthcare theme): “In Pain”  theme in October, 2017, on Oct. 24, 2017. [The editor has made minimal stylistic changes.]
https://pulsevoices.org/index.php/pulse-more-voices/in-pain/1175-metaphorizing-my-pain

This is more or less a brief summary of some of the 35 posted poems about my chronic neuropathic pain, illness, disability, spasm. The numbers in square brackets refer to the relevant metaphors used in the poems posted, listed on the right on the Home/Archive page.


 

 

 

 

Metaphorizing My Pain
 | 

My chronic neuropathic pain [03] is a physical reality, not a product of my imagination. It is the result of a spinal injury sustained during a “simple biopsy” [02] of a spinal cord tumor [01] detected through an MRI. The operation was performed by an eager neurosurgeon in 2004 [02]. When I woke from the anesthesia, I could hardly breathe [03]; I felt like a tight band was around my lower chest wall [03]. I also couldn’t move my legs [02, 05, 09], and they were extremely sensitive to touch [03]. Since then, the pain has expanded and intensified [12, 13,15, 17, 20, 21, 23, 25, 26, 33, 34, 35].

A typical dreadful day starts when I am woken up by pain all over my body [20, 23, 25]. Hot, coarse sand grains are pulsating inside my calves and thighs [03, 07, 08]; fine nails are drilling into my feet and buttocks [16]; sharp knives are plunging into my back [19.1]; needles are pricking my chest [19.2]; mallets are pounding incessantly on my arms; warm, fine sand grains are swimming inside my palms and puffed-up fingers!

It was another night with bad sleeping posture. My back must have glided off the three standing pillows propping up my back, curving my spine into a bow and pressing part of it against the air-filled pressure-reduction mattress, igniting pain all over my body. My head must have dropped forward off the pillow, compressing my cervical nerves and kindling pain in my arms and fingers.

By the time I finish my four-hour morning routine of sitting up, lying down, being hoisted onto a shower commode to toilet and shower, being hoisted back into bed, being turned left and right several times for grooming, and finally being hoisted down into my motorized wheelchair for the day, I am usually in agonizing pain. My feet feel like they’re on a tray of warm stones [08]. My calves seem to be wrapped with coarse sandpaper [08, 34]. The small, air-filled cells of my Roho cushion are pebbles under my buttocks [08]. My backrest is a stone-studded board [08].

The escalation continues with increasing power over the next 24 hours and beyond. No escape! [29] Except meeting the pain upfront. Just sit upright, keep my spine straight, sit still, breathe in and out very slowly [19.2, 20, 24, 33], guide the qi to the pain areas, be mindful of it [33]: I sink into the pain–identifying it, recognizing it, analyzing its nature, quality, patterns, locations, and triggers, so that I can learn to prevent it from spiraling into another almost unbearable episode [34].

Kit Loke
Brisbane, Queensland, Australia


Marine fog rolls in Half Moon Bay, California. By Jacek Walicki (edited by Chalger).
This file is licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. At https://commons.wikimedia.org/wiki/File:Marine_Fog_Pattern_1_crop.jpg

Lake Cerknica, by why 137 from Trieste, Italy, Uploaded by Sporti.
This file is licensed under the Creative Commons Attribution 2.0 Generic license.  At https://commons.wikimedia.org/wiki/File:Lake_Ceknica_2013_(8568169722).jpg


01. The Tumour

Blue-ringed Octopus at night. Taken at Blairgowrie Marina, Victoria, AU. Photo by Saspotato.

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More than three or even four decades ago,
a tiny, docile blue-ringed octopus
mysteriously
made its lair in my spinal cord.

It had been thriving,
slowly and steadily,
undetected,
until eleven years ago.

It extends its eight long, flexible arms
in all directions,
to siphon off nerve tissues and cells
as it pleases.

It liquidises its prey
to make minute cysts
that slowly combine
to become larger cysts.

It wrecks widespread nerve damage:
cuts off nerve communication with a burst of ink
and paralyses with a shock of venom.

Destruction from neck down to lumbar.
Progressively,
new types of pain,
new pain patterns,
new pain locations,
greater disability.

 

 




Blue-Ringed Octopus. Photo by Saspotato, in public domain, via -
http://commons.wikimedia.org/wiki/File:Hapalochlaena_maculosa.jpg