Balance Difficulties

Not getting the balance right!

The anniversary of my surgery passed and I was enjoying my new role as a specialist teacher visiting schools and giving advice on behaviour management. My knee was now completely healed and with the improving weather I thought that it was time to get out on my bike.

So one Saturday morning my son, James, and I decided to go for a bike ride. We wheeled the bikes round to the front of the house and set off. After a few metres I stopped. I seemed to have a problem with the steering. I checked the handlebars and the alignment with the front wheel. Seemed OK. I tried again and cycled about fifty metres to the end of road where as I slowed I lost my balance and had to put my foot down to save myself from falling. Again I checked the bike over to make sure it was OK. We set off again and turned into a road going uphill. I travelled another fifty metres when suddenly I over corrected my steering and found myself face down on the tarmac. I got up and tried to work out what was wrong with the bike. James was more concerned with what was wrong with me. Blood was running down my neck from a nasty cut in my chin. A helpful lady from a nearby house came rushing over with some towels for me to stem the flow of blood. James rang Catherine and again we were off to A&E, this time to get my chin cleaned up and glued.

Following this incident I became increasingly aware of subtle differences whilst I was doing everyday things. For example, bumping in to walls when I turned a corner on the stairs and not following the curved path in the garden. When I squatted down to load the washing machine I sometimes lost my balance and fell backwards. I also became aware that the world I saw moved up and down like camera shake as I walked. It seems silly now but I started asking myself whether this was how I had always seen things but had just not noticed before. Was this the way everybody saw things? Of course the answer was no and I observed a proof of this in my side to side head movements. When I moved my head slowly the world stays still and where I am looking in this world moved to the right or left depending on the way the direction the head was turned. This is the way normal vision works. However, when I turned my head quickly to the right there was a brief moment when the world moved to the left. It didn't happen when I turned my head to the left quickly. There was clearly a problem.

Late Onset Radiotherapy Damage

I met with my consultant and described these new problems with my balance and the difficulties I now experienced with my vision. He asked me to walk a few steps heel to toe and was able to observe how unsteady I was. My balance problem, he said, was most probably due to radiation damage to my right inner ear. He explained, how inside the fluid-filled labyrinth there are thousands of little hair like structures that send signals to the brain when movement is detected. These hairs can be damaged by radiotherapy and fall out sometimes months or years after treatment. These loose hairs and other debris now could float around in the liquid that filled the vessel and cause disturbance to my balance. 

My consultant then performed the Epley Maneuver to try and dislodge some of debris and move it into a less functional area of the labyrinth. This consists of four movements of the head in a particular order to achieve the correct relocation of the debris. He then arranged for me to have another MRI scan focussed on the inner ear and lower cranial nerves. He also took a swab from my ear so that it could be sent off to check for infections. 

About two weeks later I was back to see the consultant to get the results of the scan and swab. The swab have proved negative. The scan however had revealed some inflamation of the petro-mastoid bone area. I also has some inflamatory excretions in the mastoid air cells. This was explained as an effect of the radiotherapy and I was given a course of Prednisone to reduce the inflamation. In spite of me having experienced no benefit from the previous Eply Maneuver the consultant felt it was worth trying again as sometimes it takes more than one go. He did this and then said that he would refer me to another hospital where I could have balance therapy.

Vestibular Rehabilitation Therapy 

I was already booked in to see an ENT consultant at Charing Cross Hospital to discuss my hearing loss and was lucky in not having to wait too long before my consultation. He listened to my story and said that he thought I would be a good candidate for treatment of my single-sided deafness. He also arranged for me to be quickly seen by the Vestibular Rehabilitation Physiotherapist.

A couple of weeks later I arrived for my balance treatment. The physiotherapist got me to do a number of balances to assess my need and concluded that I generally was in very good shape. As a cyclist I had relatively strong legs and apparently strong legs are very useful for balance. The therapists explained how I needed to retrain my brain to cope with the loss of messages from my right balance organ. She then taught me a number of exercises that would help my brain adapt to the changes in my balance. These included the Cawthorne-Cooksey exercises. It also includes an unusual exercise of standing on one leg trying to recall as many vegetables as I could. The point of the latter being that it increasingly needed more thinking power and the balance becomes increasingly challenging. The therapist felt that provided I practiced these exercises everyday for the next month or two my brain would adapt and there was no need for a follow up appointment.

Back home, I did my vestibular exercises. I also used the family WiFit balance board to do games and activities that promoted balance. For me this was a more engaging way of doing the exercises I needed. 

My problem with the world spinning when I move my head quickly to the right continues to the present. However, once I had become aware of the problem, it took only a couple of months before I had consciously and unconsciously learnt to ignore this movement of the world and avoid making the mistake of correcting my balance. I then put this to the test. 

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Back on the Bike 

It was one of those decisions that can only be justified afterwards when your back in the comfort of your home without breaking your neck. I had now not been on my bike for a couple of months since the day I had used my chin as a brake! But cycling is such an important part of my life and I was highly motivated to get back on the bike in spite of the warnings from my doctors about my balance. I had to try and overcome my difficulties.

So on a day when the family were all out I put my cycling clothes on, unlocked the bike shed and brought my mountain bike round to the front of the house. I tightened the straps to my helmet and climbed on and started pedalling. 'It was just like riding a bike' as I did a few tentative trial runs up and down the road. I didn't have a problem staying upright whilst going in a straight line but I was completely focussed on my balance and consciously avoiding looking anywhere but straight ahead. The next stage was looking around and as long as I didn't move my head too quickly I was OK. So far I had avoided cycling with any traffic but I wanted to cycle about 1km to join up with a bridleway. I set off and was a little apprehensive when I reached the end of the road. I stopped completely and then took my time to look around before setting off again. I did this until I reached the bridleway. I remember thinking, as I set off on the muddy trail, that if I fell off into a ditch how long it might be before anyone found me. However, I banished that thought and kept going taking it slow with extra care on corners and turns. In the end the ride was uneventful if by event I mean falling off! And so I made it home having survived my first ride.

Over the following weeks and months I returned to my usual cycling routine enjoying trips out with friends and family. I still needed to make some conscious adjustments such as briefly closing my eyes after looking over my right shoulder to check on traffic and reopening them when my head was back facing forward. However gradually this became unnecessary as I fully adapted to the short visual disturbance that I continue to this day to experience. 

Another legacy of my balance difficulties is that I continue to struggle when cycling on rough terrain at speed. I therefore find descending rough, uneven, rutted and winding tracks very challenging and as my cycling companions disappear ahead I have to proceed very slowly and cautiously. In spite of this I frequently fall off and often have a few bruised and scratched legs to show for any cross-country rides that involve hills. I now completely avoid rides that involve the many specifically designed mountain bike trails that have been created over the last decade or so. 

My final note on the subject of my balance is to report another positive outcome. My role as a specialist teacher involved training and supporting parents and teachers in understanding the sensory needs of children. This is a poorly understood topic which explores the differences that everyone has in the intensity of their sensory perception. My own experience of balance difficulties and how it impacted more than just my movement, but how I visually saw the world, gave me a much deeper understanding and empathy for these sensory differences.

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