Tag Archives: epilepsy

The Illiterate Man with Brain Tumors, Fits and Common Sense.

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The Illiterate Man with Brain Tumors, Fits and Common Sense.
 
“I have brain tumors. Is it possible to treat? Will I survive?” asked the worried man as his wife tried to hide her fear of the answer.
 
10 years ago, as I sat in a peripheral small hospital outside Pune, a simple couple had walked in, carrying their poverty in obvious signs upon them. Mr. Sakharam Pawar worked as a mason, mainly repairing foundation and floors. He had recently had a convulsion, and his Brain MRI had shown multiple tumors with swelling around them.
 
One of his relatives staying with him had had tuberculosis in the past. His clinical examination revealed signs of increased pressure within the skull. After a few simple tests, I told him that the tumors looked like tuberculosis growth (called tuberculoma or Tb Granuloma), and there was a good chance that they would respond to medicines, if he took the medicines regularly without missing for a single day. He agreed. An anti-convulsant was also started.
 
The course was prolonged, over a year, and the drugs were known to be notorious. Mr. Sakharam did not ask me a single question. When I updated him about the serious side effects like liver failure or vision or hearing loss that could result because of some his medicines, he replied “Doctorsaheb, I am sure you know what is best for me. If a side effect develops, it is my fate. I know you will help me there too. I leave all the choices to you”. I was amazed at this compliance and trust. He was barely literate (can only sign his name), but his choices spoke of an excellent common sense. In an age where even the well-educated resort to all kinds of Babas, Gurus, Herbals, Net claims, ,self-treatment and even black magic, this illiterate couple was making scientific choices!
 
He did not even seek a second opinion! A doctor’s responsibility multiplies when his / her patient completely trusts them, no doctor abandons the best interest of such a patient.
 
A year later, his Brain MRI showed that all the tumors had vanished, only a small scar remained. His medicines were stopped, except for the anticonvulsant which he will have to take lifelong. He takes this single tablet regularly, and we try and make it available for him at lowest cost by requesting the pharmacy. He hasn’t had any convulsion since many years now. He visits me once a year, and brings me words that make my day. This poor, illiterate man has defeated a high-fatality disease by making the right moves in time!
 
Today I asked Mr. Sakharam if I could tell his story to the world. He agreed. Then he mused and replied “I want to tell everyone that when I was first diagnosed with this dangerous illness I thought it was the end of the world. Then I discussed with my wife and we decided to fight this with proper treatment rather than superstitious decision making. The most difficult part was that I had to keep working in spite of severe headaches and the nausea caused by medicines, as we have no other source of income. But I am happy that I have defeated such a dangerous form of tuberculosis. I would like to appeal to people to go to the doctor in time, take scientific medicines and do not fall in the hands of quacks”.
 
Indeed, we see many cases of tuberculosis, tumors and so many other diseases of the brain that reach us too late to be saved or treated. Many (even highly educated) patients resort to unscientific options and waste precious time. Many a paranoid literates would have questioned every single thing right from the necessity of an MRI to the medicines used, and threatened their doctors with legal action for adverse effects of medicines. What this uneducated, illiterate couple demonstrated really questions whether education brings common sense to all.
 
Our medical director Dr. Sanjay Pathare assured Mr. Sakharam of all the help for the future.
 
The happy couple left with blessings upon their lips. A doctor’s day was thus blessed!
© Dr. Rajas Deshpande
 
PS:
Due permissions obtained from the patient for publishing this educational post. There are thousands of great doctors all over India, even in the biggest private hospitals,, who diagnose and treat poor patients without charging fees. The purpose of the post is to spread awareness that all brain tumors do not need surgery, that most tuberculosis cases can be cured completely, and also that with proper compliance, convulsions can also be controlled completely.

The Proof Is In The Pudding

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© Dr. Rajas Deshpande

Seven years ago, Srinirmala Kanduri and her doting husband Vamsi Krishna came over frustrated by what appeared to be an unending punishment: Srinirmala suffered from a common type of epilepsy called CPS (Complex Partial Seizures), and was already taking three to four different anti epileptic medicines for the same. Her fits were still uncontrolled, and she would become unconscious without warning. She also had severe panic attacks, in which sudden fear grips the person, and a feeling of doom with actual physical symptoms like sweating, breathlessness, palpitations and blackouts keep reappearing. This not only made her own life miserable, but her husband had to rush home many times as she used to be alone. Their whole existence revolved around the fear and uncertainty of her illness, even at this young age, they could not plan any future.

Her physical examination was normal, and in spite of so many issues and side effects of the medicines, Srinirmala always kept a positive attitude. “I want to overcome this. I want to defeat this illness” she said every time. Sometimes, the medicines used for the treatment of epilepsy / seizures may themselves cause / worsen seizures. That’s what was happening with her. We gradually reduced her medicines, and were able to bring her to a single medicine, although she required frequent SOS medicine for her panic attacks.

Her husband Vamsi Krishna, working with Infosys then, relentlessly cared for her like a parent. He adjusted everything in his own life to suit her requirements: job, duty hours and undeclared leaves. He was not only completely supportive and understanding, but never even showed that he was doing anything extra for her. “We married in love” he says even today with his shy smile!

Then came the great trial of a woman with epilepsy. She badly wanted to become a mother. They were quite anxious and apprehensive, like all patients of epilepsy who face this situation. Vamsi was comfortable always with her choices, and said he would even support her if she wanted to avoid having a child. This is a nightmarish situation, given the emotional attachment that the mother and father have with the child they imagine. Now a days some safe medicines are available, although there’s none with a “completely safe” profile. Epilepsy medicines taken during pregnancy, almost all, have some risk for causing adverse effects upon the baby. Adding a simple medicine like folic acid and some supplements reduces this risk significantly.

Srinirmala and Vamsi decided to bite the bullet. These are the decisions that actually make the lives of the successful. We reduced her medicine doses to minimum, folic acid was added, and Srinirmala came with the good news soon. All through her pregnancy, her husband never left her alone except for his duty. Fortunately no fits came during her pregnancy, and she warded off her mild panic attacks with courage.

Then one day, THE call.

Shanmukhapriya was born in Hyderabad, under the care of Dr. Bhagyalakshmi at the Yashoda hospital, and both mother and the baby were smiling fit!

Another battle against epilepsy was won!

“There are ups and downs. There is uncertainty, no one can escape these. Keeping patience in difficult times helped me most, and that’s what I will advise everyone who plans to go ahead with extending the family while battling epilepsy. When I explained my situation rather than hiding it (stigma associated with epilepsy among the ill educated is a curse in India), my colleagues and bosses at Infosys and later Cognizant were very supportive.” says Vamsi Krishna.

Now Srinirmala has completely recovered, and rarely needs to hit the panic button. “I think it is very important to decide once and for all : that I will live normal, I will be fearless, whatever happens. That is what helped me win my battle” she says.

Then, as she asked the cute, sweet, and beautiful Shanmukhapriya (she is my child too, I feel, and the parents kindly allow me that) to blow a flying kiss at me, she commented “The proof is in this pudding”.

© Dr. Rajas Deshpande

PS: Thank you, Mr. Vamsi Krishna and Mrs. Srinirmala for allowing me this write-up for patient education, and Thank you Ms. Shanmukhapriya, for your heart throbbing smiles!

A Medical Lesson That Still Hurts

A Medical Lesson That Still Hurts
© Dr. Rajas Deshpande

“Can’t you see I am with a patient? We can talk later. Or may be tomorrow” snapped my lecturer at Pallavi.

Pallavi was 26, had epilepsy herself, but used to sit in our OPD to help other epilepsy patients. She came from her home by local train, travelling over two hours, and went back after OPD to attend her father. She was on many medicines to control her fits and depression, still used to have frequent fits. An epilepsy surgery was not possible, my professor and lecturer who were her caretakers had explored almost every avenue for her. Some unfortunate patients do not respond well.

Obviously she could not get a job and sitting at home worsened her depression. She was quite good looking and kind. However, her father was bedridden with a paralysis attack, and had many problems, even bedsores. That stress made Pallavi cranky and always worried. With no source of income, she was dependent upon help from the staff at our municipal hospital. As she was too proud to accept money without working, my professor had eased her ego by requesting her to help other patients: OPD paperwork, forms, getting medicines, patient education and restrictions etc.

She would either consult us resident doctors or our teachers if there was anything wrong with her or her father. Sometimes her anxiety was too much to deal with, she often asked repeated questions. Some epilepsy and psychiatry patients have worst symptoms around menses, and even get combative.
Most government and corporation hospitals have a never ending line of patients. In that rush it became impossible to answer her repeated questions patiently, and someone or other usually had to either snap at her or prescribe her an anxiolytic. Sometimes being too kind or available results in more attention seeking.

“See if Pallavi is OK” my lecturer told me after a few minutes.

Sulking, Pallavi had gone to the pantry near OPD and sat alone. During our tea break myself and my colleague Dr. Sachin went there too. My thesis / dissertation submission was in final stages, where everything about it seems so pointless and meaningless. I had to submit it within two weeks. © Dr. Rajas Deshpande

“Tea, Pallavi?” we asked her as she sat in the corner.
“No, Doctor. I’ve had it. Thank you” she said. We drank our tea in an invaluable silence.

She suddenly said: “Doctor, my father has started continuously calling me names. He uses very bad language. My headache becomes unbearable when he starts shouting.” She became tearful.
While having tea, I wrote her prescriptions for herself and her father too.
“Doctor, I want to talk” she said, “I need to sort out things in my life” she said.
“Pallavi, the OPD is still heavy, we will talk after lunch, ok?” I replied. It was 3 PM already. We finished tea and returned to the OPD.

A few minutes later, I heard her crying in my teacher’s cabin. “You must learn to be patient” my teacher was trying to pacify her while attending other patients who kept angrily rushing in, demanding their own time. © Dr. Rajas Deshpande

Pallavi got a call from home and left the OPD before it was over.
I went straight to the printer after OPD for the final corrections of my dissertation.

That evening we got the news that Pallavi had fallen off a local train, killing herself. No one knew if it was a suicide.

I have never been able to overcome that till now. What if I would have spent few more minutes, talked her in kinder words, pacified her better?

I learnt one of the most important and precious lessons that every doctor learns eventually: There’s no afterwards. Answer the patient in front of you NOW. Never deny time to one in genuine trouble. A minute of a doctor’s patience can save lives.

This became clearer later, this is true about everyone, not only doctors or patients; no one ever knows which one is the last meeting between any two. Now I make sure to only part with a proper goodbye, a smile and no bad feelings: apologise if I am wrong, forgive if the other one is. Some say that feels too formal, some think it is a way to impress others, or being excessively unnecessarily mannerful. But I know what I mean. There are no guarantees in life: about myself at least. Every goodbye is potentially final.

Patients never seem to stop. Everyone is in their own hurry, tired, pissed off . The doctor is the common point of venting problems, frustrations and also anger. Most doctors acquire the saintly art of not losing patience, raising voice in the worst of situations, but it is at the cost of being inhuman to themselves. To spend 12-16 hours every day (18-20 in case of resident doctors) among the angry, suffering and accusative without losing patience is not a joke. This is one reason why patients see irate/ less interactive doctors commonly and misinterpret it as “ego / pride / snobbishness” etc.

That said, since that incidence in our OPD, I do not refuse any question from any patient in front of me. I do not end the consultation unless I have answered their last question or the patient starts taking advantage by asking repeat or unnecessary questios.

Pallavi, I feel very sorry.
Patient First, Patience Highest, Always, for Every Doctor.
Thank you for the lesson.

© Dr. Rajas Deshpande

Real Story. Identities masked. Please Feel Free To Share Unedited.

Stop This Anesthesia

Stop This Anesthesia
© Dr. Rajas Deshpande

“Why so Doctor? Why cannot my child be like others?” asked the angry mother.

Just as I started to reply her, the patient: a 23 year old boy, went into a flurry of jerks. His body stiffened up, his eyes rolled up, and his face turned blue. He was already on the examination bed. Me and my student tried to support him there. We activated the code blue, just in case.
But the fit stopped. The boy came to, gradually. The nurse cleaned the bloody froth from his mouth. Heart rate and BP were normal now. Patient remained confused.

The mother, silently sobbing while patting his head, showed me the many large scars upon his face, head, and elsewhere. “He falls down many times every day and often injures himself. Can you imagine, doctor, what a mother’s heart feels to see her child bleeding every day?” © Dr. Rajas Deshpande
It was a case of hypoxic brain damage. The child was born in a village, the labour was prolonged and they could not reach a bigger hospital in time. If they had facilities, the child would have been normal today. Since birth, the child had had mild mental retardation and convulsions resistant to many medicines, They refused a surgery. I tried to counsel them. In many cases, we can control fits with a good combination of different medicines. But that takes time over a few months.

“We are farmers, doctor. We cannot stay home all day, we need to work to earn. The medicines are all so costly. I can sell everything to treat my son. But please tell me this will stop” the father’s voice was quivering.
It is easy to expect a doctor to detach himself emotionally from the patient, but then it is also like denying the patient empathy and understanding so crucial to their wellbeing.
“I will try my best, and I feel we can control the fits with medicines. Also, I can arrange for free medicines for your son whenever you cannot buy them. Never worry about my fees, I will be happy to treat him free. But make sure that his doses are never missed.” My teachers spoke through me.

“What after my death? Who will care for him? Who will bring him medicines? Who will ensure he takes them?” said the hefty man, and broke down. The proud feel it most difficult to declare their agonies. He tried to hide his face. The father and the mother sobbed on either side of the patient, who wasn’t yet alert enough to grasp it. © Dr. Rajas Deshpande
“There are some help communities and groups for epilepsy patients. We will enroll him into one. They will arrange for his medicines. I will also introduce you to some pharma companies who will give him free medicines as required”.
Then, pausing to realize the unasked question, I replied “And after me too, my students, colleagues or most doctors I know will never decline to treat him free. You just have to show them this note” .
I made a small note of such a request. I have never known any of my students or colleagues refuse to see a deserving patient free.

The tension in the room was melting. The parents had stopped sobbing. A possibility of hope and reassurance destroys the worst of darkness. The father folded his hands in gratitude, but couldn’t speak. The patient had a glass of water and they left.
But my mind was on fire again. Who’s guilty here?
Shall we blame fate for the blatant failures of a system? © Dr. Rajas Deshpande

Why didn’t their village have facilities to ensure good delivery? Why wasn’t it possible for them to reach bigger hospital in time? Who is responsible for millions of children who develop lifelong preventable illnesses just because of a cruel lack of healthcare infrastructure? Patients with heart attacks and strokes and cancers die everywhere everyday, unable to afford treatment or to reach hospitals in time.

In a country that needs serious improvement in almost every area of healthcare infrastructure, the whole focus is being directed at the repeated exams for doctor’s requalification.
Do we need it at all in a country that is grappling with critical shortage of doctors, and where we are promoting every other pathy to allopathy with a six month training? We need many care homes, support systems for patients who cannot afford medicines. Many more ambulances. Many more hospitals in remote areas, Many more qualified doctors to work there while being able to afford a dignified life.

But the only decisions being made are about more exams for truly qualified doctors: why? This tranquilizer to divert attention from the main issues that need correction is the worst treatment possible for Indian Healthcare. © Dr. Rajas Deshpande

Doctors are never defined by the examinations that they pass, being a doctor is far more than passing qualifying examinations. But who will educate those who never bothered to pass any dignified exams?

Just before inducing the anesthesia, the patient is told “You will feel sleepy now. Everything is ok. Take a deep breath”. With complete faith, the patient goes unconscious. It is the doctors who ensure he / she returns safe. Some rare unfortunate patients never know that they will never wake up, because there are things a doctor cannot control.

That unfortunate patient is just like the Indian Society today.
How qualified are the healthcare policy decision makers?
© Dr. Rajas Deshpande

Please share unedited. Let the society know what is critically essential.

The Epic Struggle Against Epilepsy

The Epic Struggle Against Epilepsy

(C) Dr. Rajas Deshpande

In a war-torn city, she kept on having fits almost every other day: convulsions and seizures of different types. 21 years old and home-bound, she had suffered with epilepsy since childhood. Dreams of a beautiful life that must adorn the life of a young woman were shattered due to a devastating and humiliating illness.

Her elder brother could not bear to see her suffer. He decided to take risks and enquired. Someone told him to take his sister to India for treatment. The airports in his country were destroyed or closed. All doors to India appeared locked.

Without any clues about future, he took her by sea to a nearby country Djibouti, a small African country. From there they traveled to Ethiopia. Then to Kenya. Finally they reached Mumbai and searched for the lone contact they hoped to meet: Mr. Abdul Aleem Alakeli, who works free to help patients. That was two months ago.

She reacted badly to two of the best medicines used for treating epilepsy, but their faith and determination were extraordinary. The brother and the sister had made a final decision: come whatever may, they wanted to defeat epilepsy.

Today as they left with complete control of seizures, I told the sister what she already knew: that she had an extraordinary brother. I congratulated her for her strong will power too.
Her brother was smiling after a long time, and her pride was obvious.

We wish her and her brother the most beautiful and healthiest life ahead. May God bless them and ensure their safety on the way and back home.

(C) Dr. Rajas Deshpande15622112_1172439906184669_2495525607074222032_n.jpg

WHEN NOT TO DO YOGA

WHEN NOT TO DO YOGA
INTERNATIONAL YOGA DAY UPDATE:
© Dr. Rajas Deshpande

Even as an Allopathy practitioner, I respect Yoga immensely, and owe much to it: my father insisted that I spend the sunrise hour performing Yoga throughout my school years, and later Mr. Mohandas at the “Kaivalyadham” on Marine Drive Mumbai polished some of my concepts.

However, Yoga is not always safe for all.
Here are some diseases which may worsen / flare up with Yoga, and certain conditions where the “Posturing” / “Aasanas” can lead to complications. Please talk to a well trained / qualified Yoga expert before adopting any routine Yoga schedules. Do not learn Yoga from “partially trained / unqualified” or “Student” practitioners.

The following medical conditions may worsen with Pranayama or other breathing exercises:
Vertigo
Epilepsy
Tinnitus
Bleeding in the Brain especially due to Aneurysms, Tumor
High pressure of CSF (Hydrocephalus) in the skull / brain
Psychiatric Diseases like Mania
Cardiac Failure / Severe Heart Disease
Certain muscle Diseases like Myasthenia / Myopathy
Middle ear disease
Tendency towards aspiration of food in certain degenerative brain diseases
Adverse effects of some medicines may be exaggerated (giddiness, vertigo, tinnitus, blurred vision etc.)

Patients with following diseases must consult an allopathic specialist also before starting a Yoga schedule:
All conditions mentioned above
Uncontrolled or severe blood pressure
Heart Disease, especially valvular and hypertrophic, untreated
Severe anemia
Decompensated Liver or Kidney Disease (Highly abnormal tests)
Diseases of the Spine, Nerves, Bones or Muscles
Infections, especially in Brain and Chest
Brittle bones / fracture tendency / myeloma / deficiency states
Bleeding and Clotting disorders
Ataxia / Balance Disorders
Some types of Parkinsonism where balance and / or swallow are affected.
© Dr. Rajas Deshpande

Sheershasana (Headstand) is extremely dangerous in patients with high blood pressure, aneurysms and other blood vessel related diseases of the brain, as the high pressure due to gravity may cause bleeding in the brain. If you have recurrent headaches, get a proper medical check up before embarking upon Yoga lifestyle.

The following patients must also especially avoid Sheershasana (Headstand)

Migraines / Severe Headaches / Sinusitis
Gastrointestinal Reflux Disease / severe Acidity
Patients who have had recent stenting in the blood vessels of neck or brain.
Cervical disc disease / Spinal diseases (some)
Bleeding in the eyes / retina.

Pregnant women and elderly must take special precautions while performing Yoga. All children must be supervised.

Yoga is an extremely useful lifestyle that helps achieve and maintain good health and longevity for most.
We must learn to use it wisely.

The list of contraindications above may not include all conditions in which Yoga must be avoided. Please talk to your Yoga Master and Physician both before starting Yoga.

Happy Yoga Day! Wishing best health and long life to all!!

© Dr. Rajas Deshpande

The Bloody Negligence on Indian Roads

The Bloody Negligence on Indian Roads
(c) Dr. Rajas Deshpande

There are over 5 million patients who suffer from epilepsy in India, @ 60% do not get correct treatment (various reasons). Over 4 million of these are adults. Indian law bans anyone with even one seizure from driving (lifelong). While one sympathises with the patients and all attempts must be made to treat and rehabilitate them, one cannot neglect the risk to life: their own and many others. So there are over 4 million potentially unfit / dangerous drivers in India on roads, many with heavy vehicles, some with driving as their profession. Only the aviation industry insists upon superficial screening for epilepsy. About notifying RTO by the doctor, given the illiterate + politically backed violent lawlessness of most Indian population, the doctor’s life is at risk in doing so. Most Neurologists / other specialists educate the patient about not driving after this diagnosis. Patients still continue to drive (and parents / relatives allow them to do so), with an excuse “How else will I work?’ and other illogical arguments. If we see the pattern of heavy vehicle accidents, many are in the early morning hours (lack of sleep may precipitate seizures), and are described as “sudden loss of driver’s control over the vehicle”.

Many other medical conditions are incompatible with driving, but the drivers carry on nevertheless.. Who is responsible for the thousands of these accidents and hundreds of deaths they cause? Is this not gross open negligence, with proof everyday?

(C) Dr. Rajas Deshpande