Sunday, October 28, 2007

Partial Agenesis of the Corpus Callosum

I learned something interesting about myself recently. Because of some pretty severe migraine headaches I was having I decided to get an MRI scan of my brain. Imagine my surprise when I found out I have a small corpus callosum!

Here's an image of it:

Click to enlarge
And here's a "normal" one, for comparison:

Click to Enlarge
Naturally, I was curious about the implications. What has this meant to me, if anything, in terms of, e.g., my personality, my perceptions of the world, and my intellectual development? Sadly, there's not a lot of info out there to help me answer such questions.

Wikipedia's relevant entry concerns only the corpus callosum's complete agenesis, which is associated with some pretty severe developmental deficits - none of which, thankfully, apply in my case. It does, however, mention Autism. This caught my eye because I recently had an ex-girlfriend accuse me (gently) of having Asperger's Syndrome, which is an autism spectrum condition. Perhaps she's right. I'll admit to a certain level of shyness, dislike of parties, and inability to pick up on subtle non-verbal cues, but I'm not in a position to reliably self-diagnose whether I could be considered more than, say, 2 standard deviations from the mean in that regard.

Meanwhile, PubMed is a little more helpful on the subject, though not much. Again, I get the sense, from reading those abstracts and articles, that I should be a lot worse off than I am. Even the National Organization for Disorders of the Corpus Callosum is unhelpful. This all leads me to wonder: just how unusual is my condition? How strange is it for someone with it to go 38 years showing no real signs of it? MRIs of the brain are expensive ($2K a pop, without health insurance), so not many people get them. Maybe there are hundreds of thousands, or even millions, of outwardly normal - if a bit shy - people out there who have no posterior corpus callosi.

I've contacted some folks at Cal Tech who are doing research on this. Hopefully they'll have a few answers, but it seems likely that nobody really knows much of anything at this point.

17 comments:

Dikkii said...

Rather amazed at the cost of MRI scans over there, so I looked up how much they are here - AUD $1,500 before Medicare.

Have you found a decent specialist dealing in this type of thing?

Anyway, hope that there's no ill effects. And that the migraine headaches that you were having go away again. Totally glad that I've never had one.

Einzige said...

I don't think there are such things as "decent specialists" in this area of medicine.

I've found some people who are doing research on it, in North Carolina and Southern California. As yet I haven't had much contact with them.

You're lucky to not have to suffer through migraines, dikii. The reason I finally decided to see a doctor about them was because I had two in one day! Yikes, that was awful. Thankfully I haven't had any since then.

TonyK said...

As one who has had 5 MRIs in the last couple of years, I would like to make a recommendation.

Talk to your neurologist prior to the scan, and have him/her set it up.

I have no insurance, and an inoperable brain tumor, so cost is extremely relevant to me. I was originally quoted US$1000 for an MRI, with & without contrast dye (which is considered to be 2 MRIs), but when I asked my Dr. to get involved, the cost suddenly dropped to $300.

I did have to pay cash that day, but the cost savings were well worth it.

I am afraid that I do not have any direct insight into your situation, but if it were me, I would check some of the other Brain sites, like www.abta.com (American Brain Tumor Association) to see if they could provide referrals. Also, there is always the NIH, but you have probably looked there already.

Good luck! I used to get migraines, and they are about the most debilitating thing I ever went through.

Tony

sistah43 said...

My son has moderate to severe dyslexia and dysgraphia. When he was a child he had great difficulty crossing midline (eg: touching his left hand to his right knee and alternating with his right hand to left knee rapidly) and making eye-contact. Additionally, he would hear voices that would help him in decision making. We went to a number of different specialists as his verbal abilities were well beyond his age. A psychiatrist we contacted re: the voices and a pediatric neurologist both suggested he might have a small corpus callosum. We never did the MRI as his therapy/treatment would not have changed with the diagnosis so we didn't want to put him through it. Do you have any difficulty doing activities that cross midline or doing activities that require opposite movements of your limbs (eg: he didn't crawl as a child). He's quite intelligent and has taught himself to do a whole word reading. Writing has proved more difficult. I would be interested to know if you experienced any of his characteristics. When he was under 2, I wondered if he had Asperger's, but it was quickly ruled out. There are a few other things that were indicative of a small corpus callosum; I'd have to look at his neurological eval.

Einzige said...

I'm not aware of having had any difficulties with actions that cross the midline or require opposite hand movements.

There have been a couple of isolated occasions when I've sort of "heard voices" in my head, though they never said anything articulate. Each time it happened was when I awoke at around 4 a.m. It seemed like part of my brain was still asleep and I just "heard" this odd, incessant mumbling. Very disturbing, but each time I decided to go back to sleep and when I woke up again later it was gone.

sistah43 said...

Thanks. He says he doesn't really hear them anymore, but I recently found out that he is not aware of how much he talks out loud. He's always done it, but I assumed it was an imaginary 'game' thing, but he claims he doesn't know when he's doing it.

Anyway, it's an interesting condition. He is a source of fascination to his teachers and therapists as his communication and insight are remarkable for his age, but his abilities are so limited.

S

Einzige said...

Now you've got me paranoid about how much I might be talking to myself. :)

SMellnik said...

Have you been in contact or been to the National Organization of Disorders of the Corpus Callosum (NODCC)?

There are also groups on myspace, facebook, yahoo, and there is a listserv run by the ACC Network out of Univ. of Maine.

Einzige said...

Thanks for the pointers. I'll check those things out!

vivian said...

I am 21 weeks pregnant and have just been told that the baby has agenesis of the corpus callosum. Supposedly the prognosis is very good but still very confused. Pls tell me where to turn for info. I see there is an organization but not very helpful. Who are the experts if any??? Pls email me at vavila@med.miami.edu
thanks

Einzige said...

Vivian, I wish I had some help for you, but I'm afraid I don't--especially if none of the links I provided in the post were helpful to you.

Is your child going to suffer from a complete agenesis, or will he or she simply be missing the posterior portion?

If it's the former then I imagine you have some trials and tribulations ahead, and I sincerely wish you and your child the best. If, on the other hand, it's the latter, then perhaps you won't notice any deficits in your child's development at all, other than, perhaps, a tendency to nerdiness, to keep to him- or herself, or to have a small number of close friends (I, for example, tend not to like many people, but when I do "click" with someone I treasure that relationship).

In a way, I'm glad my parents (and I) were unaware of my "disorder" as I grew up. That prevented them from being able to pin any unusual things I may have done on my "condition". They had to, instead, simply remark that I was a "weird kid".

:-)

Again, best wishes, Vivian.

jhendric said...

My 21 year old son was diagnosed with partial agenesis of the corpus collosum after an MRI when he was 11. All through his school days he had a terrible time "staying on task" (as his teachers put it). Staying focused on anything that didn't pique his interest usually resulted in failure which ultimately affected his self esteem. He's still that way.

Math processing was extremely difficult. Sense of direction, very difficult, although he does okay driving but shies away from going into unfamiliar territory.

He's VERY ambidextrous, which is a left brain/right brain thing.
He was in kindergarten before he finally decided which hand to write with.

He was a wonderful auditory learner and taught himself classical guitar by ear. He's a wonderful jazz guitarist today but lacks drive to do what needs to be done to earn a living.

He has the shy characteristics you describe so doesn't date much.

He's a kind, sensitive and wonderful guy, but I worry what the future has in store for him. He'll never have a college degree.

My husband and I were thinking of having him see another neurologist now that he's full grown to have him re-evaluated.

What we hoped he would grow out of or at least learn coping skills doesn't look like will ever happen.
We aren't sure what to do.

Einzige said...

I wish you and your son all the best!

I am ill-equipped to give advice.

Have you read any of Oliver Sacks' great books?

VMI said...

I think there's even more info out since you wrote your comment. My son is 6 and has partial-ACC. And because they do more MRIs, they have found that many people may have thin, partial or complete agenesis. There's also no set prognosis - you could be a fully functioning person with no visible disabilities or you could need a walker and use sign language to speak - and anything in between.

Check out my blog when you get the chance:
http://especiallyben.blogspot.com/

Einzige said...

Thank you for the comment, VMI, and I look forward to reading your blog as time goes by.

Diane said...

My son was born with partial corpus callosum. We discovered it when I was 5 1/2 months pregnant. He is now 14 and doing well, but it was hard.

Organization and focus are his biggest struggles. Middle School has been trying. He has always needed extra support/services in school and sees a neurologist once a year.

There are kids and adults out there with this, but in my experience--it seems really rare. I know of 2 others.

My son hasn't had issues with headaches or seizures.

If anyone wants to discuss, I can be reached at onemomsopinion@yahoo.com

sistah43 said...

Vivian, I just found this thread again after looking on peekyou.com

I see you posted a few years ago, but I am curious as to your child's development? Did your child crawl?

If I had seen your post, I would have strongly encouraged early PT to increase crawling and other tasks to help coordinate activities that might involve both sides of the brain. Like another poster, my son has high degree's of ambidextrous ability and did not decide handedness until he was 6 (and then I admit with some shame I forced him to write with his right hand as he seemed content to float through life reaching for whatever pen was closest and write poorly with either hand).

But after a few years of PT, I found that activities that involved crossing midline (like rock climbing) did more than the drill tasks of PT. My son is NOT athletic, so most of the activities were done solo with a private instructor as we could afford them.

Phonemic reading was a big problem (especially sound/vowel association). In retrospect, I think it's because there were so many exceptions to the rules and his learning was of necessity very rule based.

Anyway, I am curious to see how things have developed for your child.

If you wish to take this off-blog, please contact at sistah43@gmail.com