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