Each week at NOI we receive dozens of messages from clinicians and patients from around the world. There are technical questions about using our products, requests for clinician recommendations in a particular city or region, desperate pleas for help from people in trouble that feel lost in the medical system, criticisms about particular phrases that we have used online or in our publications, critique of our products, petitions for free ‘review’ copies, the odd treatise length exposition proposing new theories of chronic pain, and humbling messages of thanks. Across the NOI HQ staff, it roughly equates to a full-time position answering and responding to all of these.
Occasionally, a question will really grab our attention, like this one from Shirley McFadyen, an OT from Oasis Counselling and Therapy Services in Gisborne, New Zealand:
“Hi (NOI) I am working with a client with an amputated little finger on the left hand. He has high pain and sensitivity around that area. He also has phantom limb sensation related pain. When using the mirror box for the first time the reflection of his right hand ie. “left hand” appeared to him to have fingers growing out the end of his thumb, index, middle, and little finger. He also could see an extra finger growing out between the ring and little finger. Please advise if this is common (emphasis added)
Shirley McFadyen, Occupational Therapist”
What a story, please tell us more
The short answer was no – we’d never heard of anything like this and neither had anyone else in the broader NOI network of friends and faculty that we reached out to. But we could never leave an amazing story like this alone – so when we responded we asked for more of the story and received this:
“Hi Tim, thank you for your response – much appreciated. I have never come across this phenomena either – very interesting.
The injury and presentation: amputation of 5th digit left hand. Phantom sensation and severe sensitivity. Three operations later and still unable to use left hand very functionally – when he tried he would drop things through his poor grip. Sleep was extremely poor.
The client was frustrated; “I will give you 6 weeks to fix it – if it doesn’t work in that time then that’s it!”
Yes my client was totally freaked out by the phenomena of seeing extra fingers – to the point initially of not wanting to continue. Gentle encouragement, reassurance and education about the role of the brain saw him continuing. Left and right discrimination was in the normal range – I got my client to look at various hand images (Recognise online) as practise. He had difficulty imagining his left hand initially.
We persevered with mirror box – I found that if he started with looking at the reflection of a clenched fist then opened his fingers out one at a time the image was normal. If he went straight into looking at extended fingers – there were the additional ones.
With practise, initially the ‘fingers on the end of fingers’ disappeared – and he was just left with an extra finger between his 4th and 5th digit. This took longer to go, however with ongoing mirror box use, this too has now disappeared.
He now gets a normal reflection every time – and I have increased the functional tasks he is doing using the mirror box, e.g. manipulating objects in both hands whilst looking at the reflection.
I have just had a session today – his sensation/pain now reported at 5/10 (previously constantly 8-10/10 and much distress). Less sensitivity in his hand and he can now flex his 4th digit fully. I have added in more functional activities involving his left hand. Grip has improved – was 28kg force, today 35kg.
Used his left hand yesterday holding a paint roller – no flare up. Slept all night last night! Mood – bright and animated. Has gained an understanding of peripheral/tissue factors and also the role of the brain – so now very fascinated by it.
So we are at week 5 of the “6 weeks” – just squeaking in!!
Not sure if you wanted this much detail but here it is! I am part of a great multidisciplinary team – best job in the world today:)
Thanks for your interest and support” (emphasis added)
Could we share this?
The story just kept getting better and there was such juicy clinical narrative that we asked for permission to share this story. Shirley was keen and also checked with Arthur:
“I have spoken with my client and he would be happy, delighted in fact, for his story to be shared. He is happy for his first name and age to be mentioned and injury details. He also provided me with some comments from his part of the story – which I include below.
Arthur is a 68 year old retired man of European descent. He had a flexion contracture of the little finger of the left hand. The surgery was elective as the finger got in the way and it was thought it would be more functional if it was amputated.
As noted below Arthur had been in severe pain for the past 12 months – 8/10 pain constantly. Reduced flexion of the ring finger through swelling meant no grip. He was requesting amputation of his hand to get rid of his pain.
Thank you for your interest and support professionally Tim – it has been very much appreciated.” (emphasis added)
Arthur, in his own words
“I was skeptical at first about the program but it has been great. I gave them 6 weeks. The result is just short of a miracle. When I was first asked to use the mirror I didn’t know what to expect. Then I saw the ‘extra fingers’ on my hand and I was frightened, like looking into the unknown.
I didn’t want to look in the mirror again – I was totally freaked out by it.
Once I became accustomed to looking at it the fingers gradually became normal again. It even became relaxing once the distorted images went. I didn’t want to give up – it was something new and was starting to help my hand.
I had found the pain education interesting but didn’t see how it related to me. Then when I saw the distorted images realised just how much the brain was involved in the discomfort I had.
Learning that the pain wasn’t dangerous made a difference. Reassurance from another person really helped. The only pain I have now is in the stump of the little finger – about 1/10 at worst.
I can touch and move my hand normally. I am planning new building projects around my home.
I hope that in sharing my story other people will be helped.”
In preparing this post, I’ve shared a few more emails with Shirley and heard just today:
“Arthur remains largely symptom-free still– I meet with him fortnightly to monitor but that will finish soon. He asks each time “has the article been released yet?”!!”
I’ve never met Shirley (other than via email) or Arthur but I admire them both greatly for their courage, grit and perseverance, and owe them both a debt of gratitude for sharing this story. Shirley is clearly a very clever, and switched-on Occupational Therapist – the idea of grading the ‘finger exposure’ in the mirror was simply genius, and her clinical reasoning skills are obviously razor-sharp. Arthur’s insight and honesty show real bravery and his generosity in allowing us to share his story will, I’m sure, help and inspire others.
There’s so much more that can be drawn from this story – the essential inclusion of Explain Pain with Graded Motor Imagery, or the importance of clinical reasoning in the face of an unknown situation, for example, but I’d really like our readers to explore this further and share their thoughts in the comments below.
My thanks again to Shirley and Arthur, and my hope that I have done their amazing story justice.
Note: The movie Gattica, released in 1997, portrays a future where genetic enhancement has become rampant and those with less than ‘perfect’ genes are relegated to an underclass of society. During one scene, the main character attends a piano concert and discovers that the pianist has 12 digits and played a composition that can only be played with two extra fingers. The name of the piece? – Impromptu For 12 Fingers. The themes of arbitrary ‘normal’, human diversity, protective responses and behaviour, determination and courage seemed to me to be relevant here.