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Beware of Multiple (diffuse) Neuro/cerebral Cysticercosis
BEWARE OF MULTIPLE (DIFFUSED) NEURO / CEREBRAL CYSTICERCOSIS----------------A LIFE THREATENING DISEASE
This is a real life story of a brave girl who had not resigned to her fate despite affliction of an incurable disease and lived on hope after hope. She has exhibited strong will power and determination to overcome the pangs in life. She has withered many storms, displayed rare courage despite several odds and stood as a shining example to instill confidence in others passing through the same turmoil.
In the year 1977, my daughter when she was hardly 7 years old, suddenly, complained of unbearable (splitting/hammering) headache, projectile vomitings that reminded me of the Hollywood horror movie “EXORCIST” . The pressure in the alimentary canal built-up was so high, the vomit resembled the gush of a fountain. When there was no relief with conventional pain killers, anti-vomitants and dehydration had set in already, she was rushed to Dr Ram Manohar Lohia Hospital, Delhi and was put on drip. The Doctors could not make a prognosis with routine tests besides X-ray of skull. As such, she was shifted to Gobind Ballabh Pant Hospital which was better equipped to deal with Neurological and Neurosurgical problems. In those days, India did not have sophisticated diagnostic tools like CAT SCAN / MRI etc. In the absence of latest equipment, Dr A. Krishna Reddy, M.S. M.Ch., a young and brilliant Neurosurgeon had conducted “Carotid Angiogram” (where a dye is injected under general anaesthesia through the carotid artery leading to the brain and X-rays are taken in quick succession to know the presence of benign or malignant tumour) and “Pneumo-Encephalogram” (which was again a tortuous process—pumping pressurised air through inter-vertebrae) but nothing abnormal could be detected. However, on close examination, he had found with the aid of an opthalmoscope, bilateral- papilodema and intra-cranial tension (ICT) which were serious symptoms indicative that something had gone wrong in the brain. To rule out the possibility of Brain T.B., a full course of antibiotic injections were also given. He has given a provisional diagnosis as “Cerebral Cysticercosis” and prescribed “cortico-steroid” (which is usually prescribed by the Doctors as a last resort that serves as a masking effect/camouflage– to suppress the symptoms only but will not tackle the root cause of the disease) so as to reduce the ICT and give immediate relief to the patient and liberal quantities of Glycerine (pharmaceutical preparation) and ‘Decadron’ (a steroid ) injection as SOS. Glycerine has a unique feature of unhindered entry into the brain and is supposed to absorb waste fluids accumulated in the brain. She used to make tantrums to take glycerine although sweet in taste but is sticky like a glue.. After sometime she was discharged from the Hospital. We have then approached Dr P.N. Tandon, Head of Neurosurgery,AIIMS who was then credited with the highest number of successful brain operations in India. He was also very much puzzled and referred to Dr Kuchi Pillai, Endocrinologist with the observation-- “The child is a baffling problem who at one time had evidence of raised I.C.P. for which all investigations have proved of no avail (Angio, PEG, EMI scan). She is now totally dependent on Cortisone. Is there any way of solving her problem?” Soon after discharge from the hospital, she has started getting convulsions/seizures with high temperature for unknown reasons and she was again hospitalized, this time, in Safdarjung Hospital, New Delhi when Dr Maheswari, eminent Neurologist has carried out “Electro-Encephalogram” and confirmed sudden burst of waves in the graph in the parieto-occipital region of the brain and confirmed epileptic condition and prescribed anti-convulsants and wide spectrum anti-biotic (Septran). Due to continuous damage being done by the cortisone, the same was gradually tapered under the cover of Adrino-cortico-tropical Hormone injections imported from U.K. and it was finally dispensed with. It is less said than better about the drug withdrawal symptoms experienced which were more serious than the disease itself. In the mean time, the first “Cat Scan” machine was acquired by the All India Institute of Medical Sciences (AIIMS) in New Delhi in April, 1979 and the scan taken in the first instance has revealed nothing abnormal (NAD) and we were overjoyed to learn about it. But, our happiness was short-lived as Dr Ivaturi Meera Devi, Radiologist repeated the test when countless cysts of the tapeworm scattered all over the brain were clearly visible and confirmed the diagnosis as “multiple (diffused) cerebral cisticercosis” for which there was no remedy those days and the patient had to depend on anti-convulsants to be supplemented by Vitamin-D for the rest of life with its inevitable side effects like gingivitis (loose gums), behavioral changes, progressive loss of memory and osteoporosis.
We did not have the slightest idea that it was symptomatic of a strange and incurable disease caused by eating tapeworm (Taenia solium.) infected cole vegetable crops like carrot, radish, beet root, cabbage and cauliflower grown in unhealthy bogs ( grown under sewage water) although the disease is common in pork eaters when it was not properly cooked. Pigs are the alternate hosts of tapeworm parasite. Although, we are pure vegetarians, my daughter is afflicted with this infection .
As the attending Neurosurgeon who was taking special interest in the patient joined the National Institute of Mental Health & Neurosciences, I have admitted my daughter in NIMS in Bangalore as her condition had deteriorated. Despite religious intake of anti-epileptic medicines in the recommended dosages, she used to get seizures off and on sometimes mild and sometimes in severe form. Sometimes with forewarning like flashes in the eyes, slight headache, flickering of eye lids, disorientation, hallucinations, incoherent speech, tremors, (generalized convulsions) and sometimes all of a sudden, she used to fall down. Dr G.N. Narayana Reddy, Director, NIMS opined on 09th Nov. 1979 that there was no treatment available for cysticercosis in the brain. He had no knowledge of any indigenous system of medicine which could help in such a condition. The type and extent of damage done depends very much on the site of the lesion and the reaction of the brain to the cysticercosis. They may remain silent without producing symptoms for a long time but suddenly, they may produce symptoms of varying nature according to him. As Neurosurgery facilities in Chennai were considered far better in those days, I have taken her to Chennai and was treated there for 2 years (1980-82) under the expert supervision of Drs B. Ramamurthy and S. Kalyanaraman in the General Hospital there. With help from International friends and as per the advice of Dr Ayub K. Ommayya, Neurosurgeon, Maryland, USA, I have taken her to Mexico City in the year 1986 where the incidence of this disease is high. The American Doctors have stated that they don’t have much knowledge on the disease as it occurs only in underdeveloped countries due to unhygienic conditions and lack of sanitation and said that Mexicans have greater awareness in the management of the disease. The Nuclear Medicine Specialists in Mexico have claimed that they have developed a vaccine for the extermination of not only viable cysts but even the calcified cysts. I have contacted Bhabha Atomic Research Centre, Trombay, Mumbai for injectible form of I-131 and they had expressed their inability to supply the same as it was available only for oral administration and required clearance to make it in injectible form from none other than Rajiv Gandhi, the then PM holding the portfolio of Atomic Energy. Under these extenuating circumstances, the Mexican Doctors have invited us to go to their country as radio active material can’t be supplied through diplomatic bag and moreover its half life reported to be 8 days only. However, the treatment provided by Dr Gregario Skromne Kadulbik of Mexico has proved to be a tall claim and it did not bring any improvement in her case as they have used my daughter as a guinea pig for conducting experiments on her. On the other hand, she has developed hyperthyroidism due to intravenous administration of Iodine-131, a radio-active substance used as a carrier to the vaccine to the brain. Brig. N. Lakshmipathi, VSM, Director, Institute of Nuclear Medicine & Allied Sciences, Government of India, Delhi has expressed his inability for administering 24 booster doses provided by Dr Skromne as the Nuclear Medicine Committee of BARC has expressed their inability to endorse the proposed treatment. The Radiologist at the Mexican Hospital has exclaimed that she has not seen before so many cysts scattered all over in a single brain. Some of the Professors of Medical Colleges in India desired to have the cat scan pictures for teaching purpose. Based on the cat scan, a Doctor in India has submitted dissertation for the award of a Ph.D. Despite her ill health and countless epileptic attacks, she is intelligent and highly educated but is having amnesia (forgetful nature of losing key bunch, purse etc. but elephantine memory of instances of the past.) However, she is unable to lead an active life due to heavy medication and requires minimum 9—10 hrs sleep. In the event of an impending epileptic attack, she is given ‘Diazepam’ 2 cc Intra-venous to lull her into sleep. She is now 40 year old and is blessed with a normal, intelligent and beautiful female baby 4 years back through a caesarean section despite innumerable problems like static epilepsy during pregnancy (in Vitro) necessitating hospitalization a couple of times. Unlike most greedy and money minded Indian Doctors, to her good luck, at last, she found an excellent doctor couple, husband a Neurologist and wife a Gynaecologist— a perfect combination ( Jain Nursing Home, Preet Vihar, Delhi) who had taken extraordinary care of her throughout the pregnancy. We have tried Homoeopathy as an alternative medicine with disastrous results. In her case, Neurosurgeons have clearly told that anti-convulsants can’t be discontinued under any circumstances that might expose her life to mortality. According to medical sources, any damage done to the brain is irrepairable as the cysts lodged in the brain shall remain active for nearly 7 years and later they are calcified forming lesions/permanent scars on the brain surface. The cysts even after calcification produce electrical discharges triggering epileptic fits. If the presence of cysts are limited to one or two, they can be removed by operating the brain depending on their location and accessibility. In many cases, these cysts are lodged in urinary bladder, eyes or in any other part of the human body but the problem arises when cysts are lodged in the brain as they can make entry only into the brain but have no exit point. The seriousness of the patient can be gauzed from the fact that a lady in her early thirties, wife of an Armed Forces Officer who was under treatment along with my daughter had committed suicide unable to bear the suffering. Despite her protracted illness, she has shown brevity in adversity and with single minded devotion pursued her studies in Delhi University – B.A.(Hons) English Litt., M.A. and B.Ed with flying colours. It is very sad that a carefree life of childhood to be spent in merriment was robbed off from her due to protracted illness. Whenever, indications of an impending seizure are noticed, she is administered “Diazepam” 2 cc I.V. injection. The Delhi University was very co-operative and provided extra time for answering each question paper on the basis of a medical certificate issued by the Head of Neurosurgery Deptt. and University Doctor as with each epileptic attack, she needed physiotherapy to regain the normal function of her limbs. Marriage is a taboo especially for women suffering from epilepsy in Indian Society. Very recently only, the draconian law has been amended by the Indian Parliament annulling the law of equating the epilepsy as lunacy and allowing divorce. However, a broadminded, highly qualified and affluent financial wizard of 33 years has married her when she had attained the age of 30 years and her medical history was not hidden from him.
I was in touch with various multinational pharmaceutical companies like Bayer and E-Merck (Germany) engaged in evolving medicines for cysticercosis even before they have undertaken the clinical trials. Eventually, E-Merck has developed a medicine of choice ‘praziquantel’ in the form of tablets costing full course around Rs.3,000/- which is said to be highly efficacious in the initial stages of infection. The medicine is to be administered under the close supervision of a Neurologist or a Neurosurgeon only to handle the fluctuations in the Intra-cranial pressure. However, there is no hope for the old patients afflicted with this dreadful disease when the cysts are already calcified in the brain as the medicine won’t work.
The incidence of the disease has been reported to be high in the Union Territory of Chandigarh according to an independent survey conducted and reported in print media as a number of cases have been reported by the Post Graduate Institute of Medical Sciences there. Medical Extension services of various states and Union Govt. should play a prominent and key role in educating the general public with an aggressive publicity drive about the danger in store for them especially in the consumption of “SALAD” and Vegetables without proper washing and thorough rinsing in filtered water.
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