Monday, May 3, 2010

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.

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.

Want to share your story?
Invitation for Adults with ACC


  1. Hello
    I have an 18 mo old who has a thin corpus callosum. Steve is it possible you could email me directly so we can chat? Also if anyone else has a kiddo that has the same issue I would love to hear from you
    Doreen Schneider
    Dallas, TX

    1. Hi Doreen, I was just reading your old post, n was wondering about how your back than 18 month old is doing. I too have my little 18 month old that has a thin corpus callosum n is delayed in all areas. It's so consorning not to know what the future holds for my kiddo. I would really appreciate your response thanks

    2. I was just wondering how your little ones are doing I have a 4 year old with thining of the corpus callosum he's still delayed in a lot of areas but is making improvments

  2. Hi Doreen,

    Thank you very much for taking the time to post a comment to Steve. I just e-mailed Steve and passed on your comment to him so he will know that you are hoping to get in touch with him.

    Thank you also for noting your desire to get in touch with anyone else who has a child with a thin corpus callosum.

    The ACC-Listserv is an excellent e-mail support group that can put you in touch with many people from all over the world who either have ACC or a corpus callosum disorder themselves, or are a parent of a child who has a corpus callosum disorder. I would be happy to post a note, on your behalf, to the ACC-Listserv to help you get in touch with other parents who have a child with a thin corpus callosum if you would like me to.

    I will be e-mailing you with further information and instructions for how to join the ACC-Listserv yourself and I will also include information about two other ACC e-mail support groups that can help to get you in touch with other parents who have a child with a thin corpus callosum.

    I remember recently receiving an e-mail from you on May 15th. I sent you an e-mail reply on May 16th and I hope that you received it.

    Please feel free to e-mail me anytime.

    Sandie *Mom to 16 year old Matthew-ACC*

  3. Hi Doreen

    Yes, I'm happy to email you directly, and will do so in a minute. I'm not sure how I can help, but will give it a go!


  4. My husband was 64 when he discovered the exact same issues that you have related. Funny he was fairly good at sports but has never had a very good memory. We went to the doctor because his memory is getting worse. Was concerned about Alzheimer's- the brain scan showed us a very large interhemispheric lipoma and a very underdeveloped corpus callosum. No Alzheimer's but diagnosed with dementia. Any stress at all just wipes out his memory anymore. Our doctor's concern is also to watch it - he has had 2 MRI's now. The 2nd was slightly larger size measurement, but not enough to really say it was growing. The most important thing for these young mothers to realize is that it seems both you and my husband lead normal lives for 60+ years without even knowing of the issue.

  5. We just found out in a MRI yesterday that our 17mo old son has a "thin corpus callosum". Just wanted to thank you for giving a positive outlook to my day.

    Amy in Indiana

  6. I am sorry if this is a repost. I do not see my post from earlier today :)
    My son was diagnosed at 4 years old with a thin corpus callosum, and absence of the septum pellucidum. He is going to be 10 tomorrow! He had many tests done. His prognosis was that he would be just fine and to not worry Mom. That was 6 years ago, and I never found any information on this anomoly until this year. I am so happy that there are listserves and actual people out there! By the way, one of the tests that my son had showed that he had an above average IQ, and he is currently in 4th grade Gifted Program. My advice is just stay up to date, and give your child every experience that can help broaden their experiences (colors, books, reading to them, music, etc)
    Cory from Florida
    Son-Jared, 10 (tomorrow!)yrs old, P-ACC, and absence of the septum pellucidum

  7. Hi Steve
    I have 2 boys with complete ACC, I have started a facebook group called Australian Disorders of the Corpus Callosum (formally Agenesis of the corpus callosum australia) and I am also involved in starting a charity called AusDocc inc please join us on here. We are also in the process of setting up a web page too!

  8. I have a daughter who started having seizures and they are very bad. She even broke a rib during one of her last spells. She has been put on anti-seizure meds. Anyway she is 26 now, when they first found her lipoma in her corpus callosum they said it was very large, but didn't give measurements. They say it isn't growing or causing problems, but she had bad headaches as a teen and has curvature of the spine. I'm wondering if it can all be connected?

  9. Hello Anonymous (on December 3, 2012),

    I'm so sorry that your daughter started having bad seizures. I hope that the anti-seizure medication is helping her.

    I don't know if your 26 year old daughter only recently began having seizures or if she has had them since she was younger. I also am not aware at what age your daughter was diagnosed with a lipoma--and I am assuming that she was possibly also diagnosed with hypoplasia of the corpus callosum (a thin corpus callosum). ?

    Please know that this is not medical advice.

    Some people who have Agenesis of the Corpus Callosum (or a corpus callosum disorder) sometimes also have:

    scoliosis or (curvature of the spine)

    plus they can also have other medical conditions, too.

    If you have any questions about ACC please feel free to e-mail me.

    Mom to 19 year old child, Matthew, with ACC

  10. My husband is 63 was diagnosed with ACC last year we have just been advised this week through a spect scan he has Alzheimer's . has anyone come across this and can give me some advise what this will mean in the future . any advise will help x We are both in shock x


I am very interested in reading your comments and
look forward to hearing from you. Thank you.