Diagnosing Agenesis Corpus Callosum

This is a brain with a normal corpus callosum.



This is a brain missing the corpus callosum.
Also referred to as:
Agenesis of the Corpus Callosum.



This is a doctor examining the results of
the MRI or CT scan.



This is a doctor reading the patient's medical
report wherein it clearly states: Agenesis of the
Corpus Callosum.




This is a doctor giving the patient the diagnosis
of Agenesis of the Corpus Callosum as revealed
in the medical reports from the patient's MRI
or CT scan and explaining the diagnosis.

This is the typical order in which a patient
would find out that they have Agenesis of
the Corpus Callosum or partial agenesis
of the corpus callosum. This is the typical
practice of many many wonderful doctors who
are aware of corpus callosum disorders, who
diagnose Agenesis of the Corpus Callosum
and tell their patients the diagnosis, explain
the diagnosis to their patients and help their
patients receive any necessary medical attention
from specialists that they may need.

This is NOT, however, the typical procedure
of practice for some doctors even today as
I recently found out in the past week from
several adults.

Adult Patient #1: Was hospitalized due to
complications of strep throat. Neurologist
told patient diagnosis of agenesis of the
corpus callosum and proceeded to tell patient
"There is nothing to worry about it doesn't
affect you." The patient was shocked.
Patient said the doctor didn't even acknowledge
the fact that patient has a learning disability
or that patient was born with a midline defect.

Adult Patient #2: Went to get a copy of the
medical report from the CT scan. Read the
report and discovered it said agenesis of
the corpus callosum. Patient was not given
diagnosis from a medical doctor and would not
have known had patient not got a copy of the
medical report and read it. Patient has had
hydrocephalus since birth and was shunted at
two days old.

Adult Patient #3: Recently picked up copies
of medical reports from previous CT/MRI scans
in 2006 and 2008 and read it in the medical report
for the first time. Patient also has hydrocephalus.
Patient was not ever informed of the diagnosis
of agenesis of the corpus callosum from a medical
doctor and would not have known had patient not
picked up a copy of the medical report and read
it in the medical report.

This is disturbing news to learn. My heart
goes out to the patients who were not even
given the courtesy of receiving a diagnosis
of Agenesis of the Corpus Callosum when it was
clearly written in their medical reports.

On top of that they did not receive an explanation
about what Agenesis of the Corpus Callosum means
or what to expect. They are learning now for the
first time that many of the symptoms that they
have lived with during their life are due to
having Agenesis of the Corpus Callosum.

Something is very wrong with this picture.

It is VERY evident that awareness of agenesis
of the corpus callosum and disorders of the
corpus callosum needs to begin in the medical
field. No more patients should wander in the
dark and find out the diagnosis of Agenesis of
the Corpus Callosum accidentally when they pick
up a medical report and read it for themselves.

No more patients should be in the hospital
and be told not to worry because Agenesis of
the Corpus Callosum won't affect you when it
has already affected them in a variety of ways
through learning disabilities, midline defects,
hearing impairment and various other symptoms.

Over the years I have written with some parents
who also were NOT given the diagnosis of
Agenesis of the Corpus Callosum for their
child and they also only found out through
reading it in a medical report they got
themselves.

I have also written with some parents who were
given the diagnosis of Agenesis of the Corpus
Callosum for their child but were told by the
doctor not to worry about it and were sent home
with no other explanation or testing for other
possible conditions or problems.

I cannot easily let go of the fact that so many
patients and parents of little ones are NOT told
the diagnosis of Agenesis of the Corpus Callosum
or a corpus callosum disorder when it is right
there in a medical report. I believe it is a
doctor's duty to reveal the findings of any
medical test to their patient.

I realize that there are many wonderful doctors
who treat their patients with respect and inform
them of both their diagnosis and findings on an
MRI and CT scan as well as help educate their
patients of the diagnosis and make sure that their
patient receives additional care from any
appropriate specialists that the patient may
need to see. I am very thankful for doctors
like this. My own child with ACC has wonderful
doctors.

But there are also doctors who, for whatever
reason, are fully aware that their patient is
missing the corpus callosum or partially missing
the corpus callosum and they are failing to inform
them. They are also failing to research and
understand what Agenesis of the Corpus Callosum is
and then inform their patients. This is NOT right
and should not be happening!

I wonder if the doctor would make the same choice
if Agenesis of the Corpus Callosum was written
in their patient's medical report and not explore
it more thoroughly or give the patient the diagnosis
if the patient were their own child, their own sister,
brother, father, mother, spouse...hmmmm?

Diagnosing Disorders of the Corpus Callosum