Lower Cranial Palsies

Something Not Quite Right

It is difficult to say exactly when my palsies started. They appear to have come on rather gradually with me either not noticing them or dismissing them. For example, whilst using a computer yoga exercise programme I had noticed that I was no longer raising my right arm when it was behind me properly. Trying to get the arm to the right place was painful and so I put this down to just being slightly unfit in this exercise. I also put down a nagging discomfort in my right shoulder down to carrying an awkwardly large box, containing a bike for my son's birthday, round to a friend's house. A year later I was still blaming that incident and had been referred to my local physiotherapy department for some advice and exercises. Thus, it is only with hindsight that I can attribute these events to the palsies. 

The first time I became fully aware and realised that something more serious was going on was in the spring of 2015, when I noticed something rather odd about my tongue. I'm not sure what prompted me to look in the mirror and stick my tongue out but when I did, the right hand side was 'bubbling'. That was how I described the rapid twitching up and down of different parts of the right hand side of my tongue. I could not feel these fasciculations, as they are medically known, but they prompted a visit to my GP practice. My doctor, possibly glad of something different to look at other than another sore throat that day, appeared rather interested in my 'bubbling' tongue and suggested that I bring forward my next hospital appointment.

My consultant, appeared unsurprised by my tongue, as he peered inside my mouth. I suspect he had recognised early indications of the fasciculations on previous examinations. He also had my MRI results from my expedited annual scan taken the week before. The consultant explained that an area, known as the dura mater at the base of skull between the bone and the brain had thickened. There were two possible causes. It could be a side effect of the radiotherapy or it could be the start of a new tumour.

I had also got used to the loss of range of movement in my right arm and now struggled to get it more than waist height when lifting the arm to the side. It became very noticeable to me how different my shoulders were behaving and so when I cleaned my teeth with my right hand my right shoulder bone would pop into view in my mirror. This is known as 'winged scapula' and wasn't painful just a very clear sign that my right shoulder wasn't right. Though the shoulder was not painful and my right arm only hurt when I tried to raise it, I had noticed more neck discomfort and this appeared to be an indirect consequence of the imbalance in my shoulders.

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I was referred back to the speech therapist for advice on coping with my tongue. I was given a number of exercises to try and strengthen the 'good' half of my tongue and my swallowing reflex. The latter proving useful as I increasingly experienced difficulties with swallowing certain foods and particularly my daily tablets. 

A referral was also sent off to my regional hospital for a orthopaedic surgeon to assess my suitability for a Eden-Lange procedure. This operation involves the movement of tendons from the palsied muscles to ones not controlled by the spinal accessory nerve. Unfortunately, on ringing the hospital three or four months later I discovered that the paperwork for this had not been received. With the paperwork resent and another wait I finally got a letter saying that this hospital currently did not do the Eden-Lange surgery. So at my six monthly check-up at the Marsden I was then referred to the Royal National Orthopaedic Hospital (RNOH). I was very pleased with this as I had been a patient there twenty-five years earlier when I had undergone back surgery.

Within a month of my referral letter being sent to RNOH I was cycling across London to an appointment with a shoulder specialist. I wanted to cycle to demonstrate my resolution to not let my disabilities get in the way of the activities I enjoyed. Though cycling across London is not the nicest journey one could plan, I enjoyed the achievement of it particularly the final climb up to the hospital. I seem to be very lucky with the consultants I meet and this was no exception. The surgeon listened to my story and asked me to do a number of arm movements to assess the range of movement in both shoulders. He said that I was an unusual case of gradual spinal accessory palsy. Typically, most patients present with complete loss of innervation following surgery to the neck; when the nerve has been severed deliberately or more often accidentally. He told me that I could benefit from the Eden-Lange Procedure. However, his outline of what was involved in terms of surgery and months of immobilisation and then therapy left me in no doubt that this was not an option to take without a lot of further consideration. We agreed to meet again in four months and in the meantime I was to have an MRI of the shoulder and neck; a referral for an EMG (electromyography) to assess my nerve function in my right arm and shoulder and a referral for physiotherapy. I left with a new diagnosis of right scapula dyskinesia and a lot to think about.

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