Steve's Story - An Adult with ACC

Canberra, Australia


"Hi - I'm Steve, from Canberra, Australia. My
story is pretty straightforward. I went through
62 years of life in blissful ignorance that I
was missing most of my corpus callosum.
(I hadn't even heard of the corpus callosum).
I grew up near Brisbane, in Queensland,
Australia, went to school there and University
in Brisbane, then joined the Australian Public
Service in Canberra. I got married and have 3
children and 2 grandchildren so far. I worked
in a few different Departments, and got to be in
the Senior Executive Service before I retired.
Then I became a consultant for a few years before
finally stopping work a couple of years ago.

About this time, I needed a pretty standard
operation on my sinuses, and had a CAT scan of
them beforehand. This showed what the radiologist
tactfully described as an "anomaly" further back
in my head - and led to an MRI. This showed a
large (35mmx35mmx23mm) interhemispheric lipoma
(a benign (hopefully!) tumour where the corpus
callosum should be, and a very small number of
corpus callosum cells remaining - hence the
diagnosis of "hypogenesis" - ie underdevelopment
of the CC. I have no symptoms. The thing is being
monitored by MRI every couple of years to see if
there is any change.

The issue for me is whether the lipoma is stable
or growing. If stable, I don't really have anything
to worry about - at least until I'm really old, as
I understand it. If it is growing, on the other
hand, it will put increasing pressure on other
parts of the brain, presumably with nasty
consequences. Then if it is not really benign,
but malignant, the nasty consequences will be
a lot worse and will come a lot earlier, I expect.
The neurosurgeon told me that the only way to
really tell if something was malignant or not
was to take a biopsy, involving drilling into
the middle of my brain. I passed on that one!
Hopefully, if the MRI's show no change, I will
be able to have them less frequently and carry
on life as usual.

For those of you with kids with disorders of the
corpus callosum, perhaps one lesson from my
experience is that the disorder does not
necessarily lead to identifiable symptoms.
Looking back, I can see that I could relate a
number of things to my HCC - for example I am
not very well coordinated (poor at ball games etc)-
but then there are lots of people with suboptimal
coordination who presumably have complete CCs, so
I'm not even sure I can blame my HCC for that.

I think I have answered most of Sandie's list of
questions, but I'll make a couple of additional
comments on some of them. I was only an average
school student, and struggled most with abstract
subjects like Maths. I did much better with
subjects that relied more on memory like English
and History. I am not a gregarious person, but
get along well with people generally. Now that I
am no longer working, I enjoy my family, travel,
volunteering, and active pursuits like bushwalking
(hiking) and sailing.

I am very fortunate that my HCC doesn't affect my
day to day life. All I have to do is keep an eye
on that damn lipoma!

I hope that my story shows that it is possible to
have a CC disorder and (probably with a degree of
luck) still lead an happy and fulfilling lifestyle.

Steve
65, Canberra, Australia, Interhemispheric Lipoma
and Hypogenesis of the Corpus Callosum"


Thank you very much, Steve.

I am thrilled and also honored to be able to
post Steve's Story here for others to read. I
asked Steve if he would be willing to tell his
story because what he shares offers hope to
others and he represents a piece of the corpus
callosum disorder puzzle that you don't often
hear about.

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Invitation for Adults with ACC