Twenty-nine-year old Rahmat
Adekeye radiates beauty. And
when she talks, her eloquence
confirms that she combines this
beauty with brain. Adekeye
graduated with an Upper Credit
in Food Science Technology at
the Yaba College of Technology
in 2008.
But beyond her beauty and
brain, Adekeye lives in a world
of pains. The Okuku, Osun State-
born lady has been diagnosed
with congenital malformation of
the brain otherwise known as
Arnold-Chiari Malformation Type
1.
Although Adekeye was born
with the ailment, it took 25 years
for doctors to detect that the
promising lady ‘s actual problem
is malformation of the brain
because there was no
appropriate medical equipment
to detect her condition.
Adekeye narrated her health
complication to PUNCH METRO at
her residence in Lagos, “All my
life, I have been having medical
issues but they had not been
properly diagnosed. Each time I
came down with a sickness, I
would go to the hospital and
they would tell me it was
meningitis and as I was growing
up, I became curious to find out
what the problem was because I
am a very inquisitive person.
“I was made to understand that
meningitis does not strike twice.
Then, we didn ’t have Magnetic
Resonance Imaging in Nigeria. It
wasn ‘t easy to know the in-and-
out of my sickness.
“When I turned 25, I just finished
HND 1, I was at home for one
year; the school was on strike
then. It was during this period I
started feeling somehow – pains
in my stomach, joints, legs, neck,
back, and lower back ache,
different kinds of pains. It was
so terrible. It got to a point that I
had weakness in my legs, I
couldn ‘t walk well. It later got to
a point that I could neither walk
at all nor stand up. So, I was
taken to University College
Hospital. It was there I did the
MRI for the first time and that
was between July and August
2006.
“This was the first time I knew
what was wrong with me. That
was when I knew I had a
congenital or embryonic
malformation of the brain. It
started in the brain. I feel
irritation around my central
nervous system and you know
that it is the central nervous
system that controls every part
of the body.
“So, I started having real
abnormal feelings, pains, weird
sensation, numbness and
different kinds of pains, even
like electric shock-like sensation.”
Despite her complicated health
problem, Adekeye graduated
from Yabatech in 2008 and was
posted to Kaduna State for her
National Youth Service Corps
assignment. But her problem
persisted and she had to be
rushed to Lagos three months
before the end of her service.
This abruptly ended her one
year mandatory service with the
NYSC.
Between 2006 and 2009,
Adekeye said she had lost count
of the number of MRI tests she
did. Each test costs N65,000. She
has undergone three major
surgical operations to make her
live a normal life.
A letter dated September 28,
2010, written by a Consultant
Neurosurgeon at the Lagos
University Teaching Hospital, Idi
Araba, Lagos, Mr. O. B. Bankole,
said Adekeye was first seen at
LUTH’s Neurosurgical Out-Patient
Clinic in 2006 with a two-year
history of back pain and
headache.
The letter reads, “Clinical
examination and investigations
confirmed the presence of a
Chiari 1 malformation with the
presence of syrinx in the cervical
cord. She had surgery (a
posterior fossa decompression)
done in December 2006, she
recovered well with regression
of major symptoms and was
able to walk unaided after
rehabilitation.
“In February 2008, she again
complained of progressive
weakness of her left hand,
recurrence of the headache and
shock-like sensation in her left
jaw. ”
According to the report, Adekeye
did another MRI and the result
necessitated another surgery in
May 2008.
Although the report said there
was a minimal improvement,
“ the symptoms of back pain,
lower limb weakness and shock-
like sensation in the jaw have
since progressed. ”
It added that following a most
recent scan done, Adekeye had
another surgery in March 2009,
adding that “she has had
improvement in her mobility and
mild resolution of other
symptoms but she still has
incapacitating pain in the
trigeminal region. The lower
motor features in the upper
limbs still persist.”
But Adekeye was determined to
find a lasting solution to her
perennial problem. She sent her
medical records to her uncle in
Germany, who in turn got in
touch with a hospital,
Universitatmedizin Der Johannes,
Gutenberg.
The hospital confirmed that she
had Chiari malformation and the
ultimate solution to her problem
was craniotomy, otherwise
known as “2nd revision
surgery.” But to do this, Adekeye
has to cough up €26,500 about
(N5.5m) before treatment is
started.
But the centre added, “As any
extensions in the length of an
impatient stay or further
diagnostic and treatment
measures may entail additional
costs, we have to add a risk
surcharge of 30 per cent on the
general treatment rate, which we
will refund if not needed to
cover our costs. A fee of eight
per cent of the DGR-price is to be
paid for additional organisation
and coordination. ”
She said, “The conclusion of the
medical team there was that I
had to do a corrective surgery to
correct the abnormality in my
brain and that I won ‘t have to be
coming to the hospital every
now and then.
“To do that, we need close to
N10m. So, that is where the
problem lies now: how to get
N10m because already we had
spent more than N5m since 2006
when this problem started. I lost
my mother when I was 16 years
and my father is in his late 80s.
“I cannot live with it. If it is not
properly addressed on time, it
could complicate things for me,
and from that complication, I
could die. I have been given time
limit, which is 10 weeks,
otherwise it could become
something serious. It is not as if
it is going to kill me immediately
but my condition is abnormal.
“I’m begging Nigerians to give
me the chance to live. I want to
work, get married, and live a
normal, pain-free life.
“I don‘t have friends any more.
Having friends around makes me
feel depressed. So, I don ‘t feel
good at all. I’m not happy.
“If the problem had been
detected earlier, it wouldn‘t have
been all this bad. I have to wait
for 25 years of my life to know
what is happening to me. What if
I didn ‘t make it up to that stage?
I had to wait for 25 years of my
life before I could know
something this bad was
happening to me. I didn ’t know.”
Adekeye said past experiences
had shown that additional costs
always cropped up each time
she had surgery and expressed
fear that same thing might
happen if she eventually went to
Germany.
Wikipedia describes Chiari
malformation as a malformation
of the brain that can cause
headaches, fatigue, muscle
weakness in the head and face,
difficulty swallowing, dizziness,
nausea, impaired coordination
and, in severe cases, paralysis.
According to
www.wrongdiagnosis.com, “It is
caused by an abnormality of the
skull, such as a small skull or
malformed skull, which forces a
part of the cerebellum to extend
down below its normal position
in the skull. In Arnold-Chiari
malformation, the cerebellum
pushes down into the spinal
canal and puts pressure on the
brain stem. ”
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