My Story by Janet Sutherland

Hi my name is Janet Sutherland and I was diagnosed with syringomyelia in May 1994. I would like
to tell you my story.

I was born in the 1960’s and it was immediately apparent that I had no right thumb and deformity of
the right hand and arm, several months later, I was also diagnosed with a hole in my heart. Without
a thumb you actually lose fifty percent use of your hand because you use your thumb to oppose
your fingers which allow you to pick things up like bottles and glasses.

I was six years old when my index finger was altered and repositioned so that it acted like a thumb.
I have since had numerous operations on my arm including having my index finger reconstructed
for a second time when I was 21; ironically the hole in my heart has never affected me.

In my teenage years I was very active and played a lot of sport including hockey at county level,
however in my late teens/early twenties I started having joint and muscle problems, especially with
my arms, shoulders, neck and upper back, headaches became a fairly regular occurrence.
I saw a rheumatologist and was diagnosed with fibromyalgia, but my issues were ongoing and no
one could seem to really pinpoint the cause. I had muscle wasting by my left thumb and twice had
nerve tests done looking for carpal tunnel syndrome, they compared my left hand results with my
right hand and both times they said I had carpel tunnel which I queried because there is no way
you can compare my hands.

Eventually, I was sent for another set of nerve tests, the lady doing them looked at my left hand
before doing the test and said “oh you have a clear case of carpel tunnel syndrome”. She then
proceeded to do the test but fortunately for me by this time things had become a bit more
sophisticated and instead of comparing my hands, she had a computer full of other people’s results
to compare my hand to. She eventually looked at me and said “you don’t have carpel tunnel you
have a problem with the nerve to your hand, but I cannot find where the problem is: it is
somewhere between your hand and neck”.

Looking back, this was a bit of a eureka moment, because when my rheumatologist saw the
results, we discussed my headaches and neck problems and he referred me to a neurologist. The
neurologist sent me for an MRI scan and three weeks later I had more scans done, this led to an
appointment in May 1994 when I got the diagnosis of syringomyelia. I had a myelogram done
which showed cavities in my thoracic region, but I did not have a hindbrain hernia (also known as
Chiari malformation) and my consultant could not give me an explanation as to why I had
syringomyelia. It was really a case of wait and see what happens.

I think there were a couple of salient moments. Firstly, in the 1980’s when I worked at Aston
University, as a laboratory technician. I was on my feet for most of the day at work and I probably
walked miles during the day. I travelled by bus and train to and from work. In 1987, I was made
redundant, so I learnt to drive; this reduced the amount of walking I did, my headaches lessened
and my health improved (this was before I was diagnosed with syringomyelia). Secondly, in 1996
whilst I was working for Midlands Electricity, I was moved from an office on the ground floor to one
on the first floor, but I also needed access to the second floor. It was an old building with no lift and
within a few weeks my headaches and numbness increased dramatically; then one day I was
sitting at my computer and realised that I had blurred vision and my right hand had started shaking.
Scans suggested tension in my cavities, which although not severe were enlarging; Midlands
Electricity put stair lifts in for me and consequently my symptoms eased a bit, as I was not having
to walk up and down the stairs. By this time, I was under the care of another consultant and we
had several discussions about surgery and the view was that I would benefit from decompression
surgery, even though I did not have a hindbrain hernia.

In October 2002, I was admitted to hospital, but after having detailed MRI scans and discussions, I
actually had c3-c6 laminectomy instead of decompression surgery. After surgery I noticed a distinct
improvement in my hand and forearm, and after a while my headaches became less intense and of
shorter duration.

However, I became very aware that my headaches and other symptoms were often triggered by
such things as exertion, walking, bending over or coughing. In fact, it could be very dynamic in that
I could feel quite well, cough and within 20 minutes have a headache, blurred vision, increased
tremors and become unsteady on my feet.

Since my diagnosis in 1994, my health and limitations have fluctuated considerably due to
syringomyelia and its effects. I have sometimes benefited from lumbar punctures, although the
relief is generally short lived.

Since 1992, I have seen a traditional acupuncturist and this has particularly helped with my general
health and I have some gentle chiropractic treatment which helps keep my spine reasonably
straight and I find this helps me.

In 2009, my GP referred me to the local Community Neurological Team. The physiotherapist
identified that I was suffering with fatigue and helped me to identify ways in which to help myself.
Meanwhile the occupational therapist provided me with several aids and I have made some
adaptations to my home to make my life easier. With regards to my fatigue, over the years I have
become very aware that by being well organised and pacing myself, and making sure I get enough
rest means I can cope reasonably well.

However, even so over time I am aware that slowly but surely my health has steadily deteriorated
since my surgery in 2002. This became more obvious in 2014 after my mother had a fall and I
became her main carer. So, instead of my mother and I helping one another I was having to do
more for myself and I also had to do a lot more for my mother. Consequently, my health started
deteriorating and my syringomyelia symptoms increased.

I had been aware for a long time that walking can affect me quite badly and in 2015 I went to an
exhibition where motorised scooters and wheelchairs were available to use. At the time I felt well,
so I decided to see how far I could walk on what appeared to be a good day before I had any
problems. To cut a long story short, as I walked out of the exhibition hall to go back to the car
there was a bench, I sat on it and thought I’m not going to make it back to the car. So, my sister got
a wheelchair and wheeled me to the car. Over the next two days my symptoms came out with a
vengeance: – severe headache – only relieved by lying down, pain and discomfort, numbness in my
face and back of shoulders, extreme hypersensitivity – which feels like ants running up and down
my body and it’s so strong I cannot sleep so my fatigue gets worse, shaking, unsteady on my feet
and dizziness. I increased my medication and basically for the next seven days, I was unable to do
anything useful; I spent all my time lying down to ease my head and only did what I really needed
to do at home. I never went out of the house because I felt so rough. So, I realised I needed to
make some changes to improve my quality of life.

In 2016, I went to Malvern Spa with my sister for the day; the water was so warm that I chilled out
and relaxed and realised that in the water my back eased and I was in less pain and discomfort.
As a result, I became a member of the spa and it was soon my place to go for relaxation.
In 2017, after numerous discussions with my GP, physiotherapist and occupational therapist I
made the decision to have a power chair (basically a wheelchair with a battery) and a hoist fitted to
my car.

I was very aware that it is important to do some walking as I did not want to become completely
dependent on my power chair, but similarly, I realised that I needed to use a power chair to give
me a decent quality of life. I now assess what I am doing and if I am meeting a friend for lunch I will
walk, however, if I am going to be out for several hours, I will use my power chair.

A few months after getting my power chair and hoist I had my first adventure in North Yorkshire. I
had a fantastic time, including thinking I was going to get stuck in Filey! But what I found on the
holiday was that if I used my power chair whilst out, I could do a lot more. I was still with it and alert
later in the day and was able to enjoy myself in the evening, rather than thinking I need to stop and
rest. I also returned home refreshed rather than feeling rough and in pain after the holiday because
I had done too much.

For the last three years of my mother’s life, she had to have someone with her 24/7 and most of
that time it was me. When I went out, I was always clock watching to make sure I was home on
time to relieve whoever was caring for mom. During the last couple of months of mom’s life, we did
lots of talking and laughing, but the final thing she told me was how much she loved me and when
she was dead, I should not be sad because she’d had a good life and I should go out and have
fun! So, after my mother’s death I spent time catching up with friends and family and going to the
spa to try and do a bit of exercise in the warm water. My mileage on my car increased significantly
and I took several holidays and breaks.

Then Covid and lockdowns changed our lives.

I am now enjoying life again but as usual dealing with the ups and downs of syringomyelia.

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