Here I will begin by giving a very brief explanation to some of the facts about the acute and chronic phases of neuropathic pain, then I shall continue telling my story.

Neuropathic pain is strange, to say the least. In my experience, this was a blessing in some way! Past the acute phase, the pain behaves like a yo-yo, extremes of pain for a period followed by a shorter period of manageable pain. If it was not for this short period of reprieve, nerve pain would be impossible to tolerate, and it would become a suicidal pain.  

As you shall see from my future blogs, my neuropathic pain progressed through different and overlapping phases. Early on there was the predictable phase. This was when any physical exertion would trigger my nerve pain, and hence I developed the fear of any physical activity. It also forced me to rest as much as possible. Then came the confusing phase. This was when my neuropathic pain would strike out of the blue, making me look back and try to find an explanation. In the third phase, the more I forced myself through my pain, the more tolerance I developed towards my nerve pain and the more I could perform.

Once my nerve pain hits 8 out of 10 on the pain score, it tends to persist for a few days before it goes down back to a tolerable level.

Neuropathic pain is one example of an invisible illness. When my pain was tolerable, and I was able to do things, people would remark by saying, ‘Oh you look good’ and assume that I have been cured. At its peak, my nerve pain would make me disappear and disconnect from the outside world – a lonely dark phase others do not witness. My disappearance would soon be noticeable, and people responded by disconnecting from me when I needed them most!

I would never for a second blame ordinary people for not knowing any better. But when it comes to medical professionals, especially doctors who specialise in pain management, I would expect them to know and to behave in an empathetic way towards me.

When I saw the pain management consultant (the husband of my work colleague) mid-afternoon on the 23rd of April 2012, I was expecting to be treated professionally and fairly. As a pure coincidence, the appointment date happened to be in one of my earliest experience of the very short phases of pain reduction after a period of rest.

While waiting for my turn, I was made to fill in my personal details and complete a Pain Assessment Questionnaire.

When my turn came, the nurse collected the paperwork from me and led me to the clinic.  My wife waited outside the clinic room.

The reception was cold, not even a smile. After having explained my horrible experience since my hernia operation, I made it abundantly clear to the specialist that today was an exception. I also said that the appointment was at a time when my pain was not at its worst. I had just experienced a degree of temporary relief after resting. However, the pain followed a cyclical pattern. It would reduce when I rested and increased with activity. At that stage, there had been some improvement but only for a day or two. In fact, I told him that I was in terrible pain and could only drive for a very short distance. My wife had driven me to that appointment. I said that I was afraid to drive because the pain would become so bad, that I would be at risk of being unable to control the clutch.

He did not ask me about my work load, or the effect of pain on my activities of daily living.

Once he finished taking my history, he then asked me to go to the examination bed behind the curtains.

One of my favourite subjects as a medical student was the neurological examination, and I excelled at it. Of course, I was observing the way he conducted his examination of the nerves in my left groin area. However, I was not impressed, to say the least. He did not have the appropriate needle to test for what we call ‘pinprick sensation’. For the temperature sensation test, he startled me by blasting me with a cold spray on my right groin without forewarning me. This made me jump! It really upset me. He carried on by using the same spray on my left groin, both flanks and my lumbar area. He then muttered, “loss of temperature sensation in the left groin.”

He followed this by spraying the inside of my thighs and while spraying he muttered, ‘checking the genitofemoral nerve.’

He then said that he was going to test for the pinprick sensation but did not have the appropriate testing needle! He asked the nurse to get one from next door but did not wait for her and carried on by using a 23-gauge needle – which causes a skin puncture and makes it bleed. Once again, and without any proper warning or explanation he started pricking me on the right and then on the left side! Patient’s eyes should be closed while performing skin sensation tests. He ignored my offer to close my eyes.

After he finished, I got dressed and went back to the consulting desk.

The consultation ended with him telling me, “you look normal to me, you don’t need anything and should go back to work.”

He then offered me a follow-up appointment after one week, but I declined.

Extracts from my pain specialist’s letter to my GP:

Here are some selected statements from his letter to my GP (extracts in bold, my comments in italic):

“Thank you for referring this man, …”

Consider and compare this to how medical colleagues should normally address each other.

“In summary, this is a man who describes a good history of significant neuropathic pain in an ileo inguinal [Sic] distribution after a hernia repair, …”

Notice how he was referring to me again!

“I do not think he warrants any form of injections etc and my next step if he were significantly disabled would be to give him some Pregabalin.”

Should doctors wait for patients to become significantly disabled before starting any treatment?

“I have given him my details so he can contact me again if he has any problems, but as things are at present, he seems to be making a good recovery. I have suggested he returns back to work.”

A pain specialist who seems to be totally ignoring the way my neuropathic pain was behaving and who wants me to return to my full-time consultant job. There was not even a consideration for a gradual return or a reduced workload.

My time table and work pattern before my illness:

I specialise in general surgery and sub-specialise in oncoplastic breast cancer surgery. My work, therefore, involves a combination of clinic appointments and surgery plus a weekly on-call duties. Breast cancer clinics tend to involve seeing fewer patients for longer consultations than many other forms of work, and I would manage to see around 15 during a regular clinic.

Contracted to work 10 PA’s + 2 APA’s

*On call – 1 in 9 weekends and 1 in 4 Mondays plus 1 in 4 Fridays

I commuted to work by car. On a good day, I could get there in 30 minutes. More often, it would take me around 45 minutes. If the traffic was particularly bad, it could take an hour and a half.

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