Nail surgery possibly caused CRPS in both my big toes

In this post I will document my toenail surgery progression from initial intervention, to infection and the emergence of possible CRPS actually diagnosed as Erythromelalgia in both my toes.  The photos are rather grim I'm afraid, but they clearly document my experience with toenail surgery and emergence and treatment of CRPS Erythromelalgia to date.

I have been suffering from ingrown toenails since my early teens and I knew I would eventually need to have toenail surgery to stop them ingrowing and causing infections in the sides of my toes (I had just been putting off for as long as possible - 17 years!).  In April 2011 I finally plucked up the courage and went to see a Podiatrist who told me that I had incredibly wide nails and that I would definitely benefit from the procedure, known as a bilateral hallux nail surgery and phenolisation of the nail bed matrix.  I went to see two Podiatrists who both came to the conclusion: I needed to have nail surgery to prevent the nails from ingrowing again.

The night before toenail surgery (extremely wide toenails)

I had local anaesthetic and somehow managed to watch the entire procedure.  The nail surgery involved the following brief (non-technical) description:

• Three anaesthetic injections in each big toe.
• A sharp metal spike inserted into each side of the toes from the tip to the nail bed matrix to loosen the nail from the nail bed.
• Nails cut down at each side to where it meets the cuticle with a large pair of medical scissors (in my case about 5-8mm off each nail side).
• The cut sides were then gripped and rotated through 180 degrees and pulled, firmly out, ripping the nail from the nail bed matrix.
• At this point it was noted that the nail bed matrix (at the bone) was much wider than anticipated.
• A wax was then dabbed onto the top of the toenail to protect from phenol acid that was being prepared.
• Cotton buds were then dipped into Phenol acid and were inserted down the sides, where the old nail sides used to be, for 6 seconds on each side, twice.  
• Metail spike was re-inserted into each side (for a second time) to scrape away at the bone to destroy the nail bed matrix of the sides that had just been removed.
• Once phenolisation was complete the sides were packed out with an absorbent gauze.
• Both toes were then covered in gauze and tube grip bandaging.

 1 week after nail surgery

After the toenail surgery I got infections in both toes quite severely (although not at all uncommon for this type of surgery).  This required two doses of Flucloxacillin antibiotics for two weeks and this successfully got rid of the infection.

2 weeks after nail surgery

In the weeks that followed, I made regular trips back to the podiatrist to clean the wounds and get new dressings and the surgery seemed to be a success, i.e. no further nail growth at the sides or from the nail bed matrix.  Considering there is a 30% chance of nail re-growth, I've been quite lucky not to have nail regrowth.

Once the infections had gone, I started to notice a red, hot, swelling sensations in each toe that became aggravated upon activity, such as walking or standing to cook after about 15 minutes.

 3-4 weeks after nail surgery (infection nearly gone)

I went to see my GP and was told that it was most likely normal after such a procedure and was given another dose of antibiotics to treat the swelling and inflammation.  I decided not to take the prescribed drugs as I felt it was not an infection issue.

 

7-8 weeks after surgery, redness, heat, swelling pain becomes more apparent

Instead of taking antibiotics, I had several blood tests to detect if I had high CRP levels (which would indicate an infection in the blood or bone) that could explain the redness, heat and swelling.

 9-10 weeks after nail surgery redness and swelling still there

Other blood tests included:

• Blood sugar, red blood count, diabetes etc; and they all came back negative.

My GP gave me some information on CRPS and organised an appointment to see a Consultant Orthopaedic Surgeon.  At the appointment, I was asked to aggravate the condition after 15 minutes of walking.  When I came back after 15 minutes, both my feet had reacted and the condition was severely provoked.

 11-12 weeks after surgery, still swelling up and diagnosed with CRPS

I was told I had 'gross erythema from the hallux proximally to the ankle' and 'mild allodynia and pain on firm palpation' (as the images clearly show above and below).  Basically both my feet were entirely red, swollen, hot and painful, but were not hypersensitive, as is a common effect of CRPS.  I do not have abnormal hair growth on the toes either. The diagnosis was CRPS Type II as a sub-type injury caused by the nail surgery I had.

16-18 weeks after nail surgery about to take 25mg Amitriptylene drugs

I was told to take 25mg of Amitriptylene (also used to treat depression as it numbs the nerves) each night for 6 weeks, daily Vitamin C supplements and increase activity.  There is a 30% chance that this drug will 'reset' the sympathetic nervous system response that causes the dilation of the blood capillaries, but in my case it has not resolved the condition, just mildly improved it.  During this time I've felt pretty awful the first week and about 20% less awake feeling than I would normally, almost in a dream like state for most of the time.  I have ~20% less feeling in both my hands as well.

 

CRPS after 6 weeks of 25mg Amitriptylene drugs, showing mild improvements if any.

I have been as active as possible, mainly cycling for 20 - 30kms when ever it is reasonable weather (in the UK, not that often but at least 2-3 times per week).

Whilst taking this medication I had the usual side effects but noticed a reduction in the spread of CRPS in my toes.  It does not spread quite as far up towards my ankle.  The time it takes for the inflammation to trigger has increased slightly, but has not solved the CRPS by any means.  The intensity of CRPS in my toes is more or less the same.

Other triggers of the CRPS reaction include:

• Warm showers or baths (more blotchy pattern emerges).
• Consuming Alcohol.
• Tight fitting shoes.
• Warm air/sun temperatures (sat down in the sunshine for e.g.).
• Running for 5-10 mins.
• Walking for 15-20 mins.
• Cycling for 30-40 mins.
• Standing cooking for e.g. ~15-25 mins.

28 weeks after nail surgery: CRPS swelling in the left big toe after running on a cross trainer for 30 minutes. 

28 weeks after nail surgery: CRPS swelling in the right big toe.

The way I would describe the feeling of CRPS is this: imagine someone has struck both your big toes reasonably hard with a hammer.  The feeling you would get 10 seconds after being struck - that warm, blood rushing, and swelling feeling you get when your body responds to a trauma, followed by emerging redness, swelling then pain.

You can see where the edge of the new nail after surgery creates a pressure point on the skin around the toe.

I have now organised to see several specialists in CRPS in the UK (pain management specialists and further surgeons) to look at what options are now available to me.  Once I have seen them I will post further blog entries and share my experiences.

I personally suspect that there could be other potential causes to this diagnosed CRPS such as:

• Sharp edges from where the old nail sides were removed.
• Possible overactive sympathetic nervous system.

I also aim to get an MRI scan of the damaged tissue and X-Ray to see if there is any de-mineralisation (mainly calcium deficiency) of the bone.

*** UPDATE October 2015: I have actually been diagnosed with Erythromelalgia, not CRPS as was originally suspected. I shall update the blog with EM related info as soon as possible.
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If you've been affected and/or have CRPS in your toes, please do get in touch and share your experience by leaving a comment.  This will hopefully share vital knowledge between others in a similar situation.  Lack of knowledge seems to be one of the biggest barriers right now for me and I'm sure also for many others too.