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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