Gill Brereton: My Chiari Story

In 2009, I was a Head of a Department in a local Further Education college and a single
parent with two young children, who were then 5 and 9. I was constantly rushing
everywhere and suffered from dizziness, headaches and spells of feeling faint. I visited the
GP a number of times and stress and anaemia were blamed, my symptoms never eased
and I also developed numb, tingly and clumsy hands.

In January 2010, I had a slip at work and my hands seemed to deteriorate, plus I had
persistent neck pain. At a pain clinic appointment for my back, my consultant did some
tests, as he didn’t think it all added up to the suspected disc problems in my neck. I paid
privately to see a neurologist and to have the scan he recommended. I went for my
results, with Mum and Dad in the waiting room, their last words, ‘if its anything serious ask
the nurse to come and get us.’

The neurologist had my scan up and said that it wasn’t a disc problem, but an abnormality,
my first thought was phew, then he explained my brain was extending down my spinal
cord. He showed me on the scan where my brain was protruding down, my bent odontoid
peg and brainstem kink, all indicative of Chiari type 1 malformation. A neurosurgeon
appointment was needed to assess if I required surgery.

I left completely shocked and on autopilot, I clearly remember saying to a friend that night
that it seemed I’d have surgery and then I’d be ok, and it wasn’t that serious, she wasn’t
convinced. I found the information on the web confusing, conflicting and at times downright disturbing. I eventually found a forum, Facebook pages and I was introduced to the
Ann Conroy Trust, through which I’ve learnt so much and made many great friends.
My neurosurgeon was informed and knowledgeable, he felt I needed surgery, and
urgently, my herniation was 13mm and very plug like on the right, I didn’t have a syrinx,
however he felt that was a risk. Eleven weeks later I calmly walked into the Royal Victoria
Infirmary in Newcastle, after weeks of panic and manically tidying drawers and cupboards,
a calm had descended on me, which was to carry me through to the theatre door. Many
people have described this weird calm feeling, I was almost excited this was the start of
getting better. I had gotten very poorly in the three months leading up to surgery, my leg
was kicking out, I was very fatigued, headachy and my hands were numb, tingly and
I went down to the theatre mid-afternoon, the next I knew I was in high dependency, that was
a tough night, my normal tablets were given orally and sure enough they didn’t stay down
long, so it took a while for the vomiting and pain to be brought under control. The next day
though I woke up feeling surprisingly well, better than I expected to feel. I moved to a ward
that evening and spent the next few days, sleeping, taking tablets and gradually
mobilising. On the third day, I was rushed for a scan due to pain, it turned out air bubbles
from the surgery were to blame, so nothing serious, a course of steroids brought the pain
under control. I quickly realised my hands were less clumsy and numb and once I was
walking my leg had stopped kicking out, this was still whilst in the hospital. I vividly
remember touching a finger to thumb and finding the sensation ‘normal’.
I was discharged a week after surgery and then came the long haul, recovery takes time
and you can’t rush it, real life has to go on a peg for a while, you can’t fight it. The months
went by and I still felt nauseous, tired easily and my head and neck hurt to varying degrees

but recovery was looking good and most of my symptoms were greatly improved. Six
months after surgery I felt the best I had done for a very long time, I had headaches but
those and my other symptoms were manageable. Over that summer though I started
getting more persistent and severe headaches. I saw both my neurologist and
neurosurgeon and they were of the view I was ‘nicely decompressed’ and reiterated that
surgery wasn’t a cure and I had to learn to live with my condition. This brought my lowest
time, Christmas 2011 was desperate, I just saw no way out and the reality of Chiari had hit
Early in the following year I saw a neurosurgical registrar who agreed my headaches
weren’t what he’d expect and should be investigated, my surgeon wasn’t convinced and
after a long discussion, he agreed we would do intracranial pressure (ICP). He still felt that
these weren’t pressure-related headaches. I had ICP a couple of days later and was found
to be suffering from a dural leak that was causing low-pressure headaches. In July 2013, I
had revision surgery to correct this, a patch was placed on my dura. In the original surgery
C1 and part of C2 were removed and my dura was left open. Normally this self-seals but
mine hadn’t and was leaking during the day, which coincided with my headaches
worsening during the course of the day.

When I first wrote this story I was waiting for a date, contemplating further major surgery
was a frightening prospect, but it didn’t have the negative impacts of the first. The
anaesthetic and post-op pain relief were managed brilliantly and the surgery was very
successful, I haven’t had a low-pressure headache since that day in July 2013.
While I was recovering from my decompression surgery, I was studying with distance
learning courses. I did two accounting courses, which has led to me becoming fully qualified
and registered with the Association of Accounting Technicians (AAT). This course gave
me a focus, saved me from day time television and helped my brain recover function, I had
awful difficulty with the transposition of numbers in the post-op period and I’m sure studying
helped. I am sure that my recovery was greatly enhanced by having a ‘useful’ purpose
during this period.
This qualification gained in otherwise ‘dead’ time has opened doors for me. I set up my
own business originally doing bookkeeping, admin and accounting. Self-employment is a
good choice for people managing chronic conditions, especially if you have a marketable
skill that you can work on from home. I stopped claiming benefits in July 2012 and being
economically active, paying back to the society that helped support me when I most
needed it.

I re-married in 2016 and my husband now also works for our business too. My children
loved having Mum at home in the holidays and when they came in from school. Working
for myself enabled me to do this and I have also been able to better manage my Chiari
and other health problems.

Chiari can be tough, when you are diagnosed, there is a wealth of information to confuse
you, whilst I heard my neurosurgeon saying surgery wasn’t a cure, I hadn’t absorbed what
that meant. I now think I felt I wouldn’t be cured but would have no symptoms…. Not much
logic there. I’ve had my really low points physically and emotionally. I’ve learnt who
matters in my life, who is there for me and what really matters to me.

I needed revision surgery, which isn’t the norm, many people with Chiari either don’t need
surgery or have surgery and manage their conditions well, you don’t see them on the
forums or the internet usually, they are out there getting on with life.
It’s important to learn about this condition and how to manage it, but from the right
sources, I believe information is power, take advice from neurosurgeons, neurologists,
nurses, physios and others involved in your care, ask them questions and keep asking
until you understand and don’t assume everything that happens is Chiari, we get the flu
just like everyone else!

Being diagnosed with and learning to live with Chiari is tough so don’t be frightened of
neuropsychologists or counsellors. They are a tool to help us deal with this momentous
thing, along with those other medical professionals involved in our care.
My life now whilst different from the one I had 15 years ago is in many ways a happier one,
I have a better balance and l consider myself one of the lucky ones.

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