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