Red Flag Symptoms – The Ticking Timebomb

A loud Beep! Beep!! Beep!!! noise coming from the patient’s monitor made the nurse panic and she started yelling “Emergency!!!…call the doctor!!!”

The ICU nurse had the doctor on the intercom – “your patient is pulling the airway tube … and we are unable to restrain him.”

Afterwards, the nurse made a call to Mrs Kumar and his relatives informing them of the incident and asked them to come down to the ICU.

Mrs Kumar had no clue why he was behaving that way. She wondered whether he was missing his family or he was in some sort of physical distress. Despite being reprimanded for pulling out the airway and trying to stand unaided, Mr Kumar was unfazed in his attempts to do so again and again.

The doctors and nurses were pleasantly surprised when they witnessed him come off the life-support. His persistence had paid off. They attributed this miracle to his will-power.

This is the heart-rending story of Mr VV Kumar, one of the top management consultants by profession, who experienced a numb area on the upper part of the left side of the face nearly a year prior to this surgery. His doctor told him – “It is nothing. Do not worry.” So, how his family doctor brushed aside his concerns. Mr Kumar recounts that he used to hold the doctor’s views in high esteem and would never question them. Therefore, he initially ignored the symptoms as his doctor was not particularly concerned. However, it kept bothering him. At some point, he thought it to be prudent to get the numbness checked.  By providence, there was a neuro-physician, known to him, who was present in the consultation room. He was lucky this time. “Without his input,” says Mr Kumar, “I would have been a dead man.”

The neurologist asked Mr Kumar to walk in a straight line and did some other examinations. He suggested an MRI to be done in another city, which was an overnight journey by train since it was not available locally.

To expedite things, Mr Kumar got an MRI done at Hyderabad in India, which is one of the metropolitan cities. His world fell apart when he was diagnosed with a 2 cm tumour, astrocytoma, which was located in a very precarious position where the risk of damaging the nerves during surgery was very high…a position which is risky enough to cause death.  Out of the three doctors shortlisted, Dr Raja Reddy from NIIM’s Hospital, Hyderabad was chosen to perform the surgery to remove the tumour. 

Postoperatively, Mr Kumar was affected on the left side leaving him unable to close his eyelid. His face was pulled to one side, and he was also experiencing loss of hearing. “Even before a surgeon operates, he or she should educate the patient and provide him/her with an overview of the surgery along with possible/likely life threatening complications, recovery process etc. It is not that the surgeon needs to protect himself medicolegally but should mainly do it to give a heads up to the patient to prepare him or her for any eventuality.” Mr Kumar looks in the distance as he speaks “I was not at all prepared for any complications and was in a shock for a while.” “Unfortunately, there was damage to the 6th cranial nerve during surgery”, heard Mr Kumar’s family when he was struggling with his hearing and face weakness following the surgery. “I would have preferred hearing with my own ears and ideally before surgery… but I could not hear anything. I was informed by written information given to me on a piece of paper”.

Following recovery from surgery, he attended the recommended follow up religiously every 3 months at NIIM’s Hospital, Hyderabad with Dr Reddy. A year after the surgery, when he came for his fourth follow-up visit, he learnt that Dr Reddy had resigned and left for another hospital. There was no formal or informal hand over of his care. This was absolutely shocking for him as other surgeons didn’t know about his condition at all. This brought a huge challenge to the continuity of the care.

Mr Kumar recounts the sad moments, “I really felt helpless and disheartened at that time. I didn’t know where to go. Even with paid healthcare, I felt as if I was at the mercy of the doctors. It would have been really helpful if there had been a formal handover of my care to another surgeon. At least, the surgeon or his secretary could have made a courtesy call informing me of his move and guiding me on my further care. But alas, I didn’t have that luxury. Eventually, I knew I would start over with another surgeon, but the attitude of apathy from the system was appalling.”

As he was walking out of the hospital, he happened to run into a neuro physician, Dr Mohan Das. Dr Das was flabbergasted to hear that postoperative scans were not done in last year despite the hospital protocol instructing to do so. When the MRI was done the next day, Mr Kumar was devastated to learn that the tumour has increased in size to 6cm and was pushing against the brainstem. Mr Kumar continued, “I was hoping that the worst is over but it was only the beginning. My feelings were all over the place. I don’t know how I was feeling at the time…an emotional mixture of deep hopelessness, dejection and unfairness.” 

Mr Kumar once again approached Dr Reddy, the original operating surgeon who conceded that he had operated and removed only part of the tumour. He had not removed the sheet of the tumor as it was engulfed by the vagus nerve. He said that the benign tumours were known to grow vigorously. What was devastating for Mr Kumar was that he and his family were kept in the dark about such an important aspect of the surgery for reasons unknown to them.  Common sense dictated that if the doctor was aware of the residual tumour, he should have carried out aggressive postoperative surveillance to detect the tumor at an early stage, since recurrence was highly likely due to incomplete excision. Mr Kumar had to pay a heavy price for this negligence. Mr Kumar relates to the sad memory of those days, “Was I asking for a favour?  Did I not have the right to know about the tumour, surgery details myself? But the most perplexing thing which I will probably never understand is why aggressive monitoring of the tumour was not carried out if it was already known that a part of a rapidly growing tumour had been left behind. I lost all hopes in the so-called hi-tech hospitals, in the big cities. But what choice did I have at the time.”

Mr Kumar went to KEM hospital in Mumbai for a Consultation, and he was told that there was a 60% chance of mortality on the table if he went through another surgery. The only option they suggested was gamma knife surgery which was available in the USA and South Korea only.  Mr Kumar made the decision to get the surgery done at Temple University, USA.

However, the neurosurgeon, Dr Baccai, did not feel that gamma knife was an option as it was used for only peanut sized tumours. He suggested an operation, but there was a likelihood of the left side being paralysed,  with a 100% loss of voice and swallowing function. He, though, said there would be no mortality on the table.

In the ICU after the surgery, Dr Baccai told Kumar “I am sorry Mr Kumar that I was not able to save the left side which is now totally paralyzed and we could not save your voice.” Mr Kumar shouted out loudly in dismay, but it was useless as nobody heard him.

The next three days that followed were full of internal turmoil and deep reflection for Mr Kumar. “I couldn’t bear to be a liability to my family. I began to question the purpose of my life. I could not afford to be dependent on my family for the rest of his life, and I really did not want to be a burden.” Mr Kumar narrates.

He made a tremendous effort to move his left side and kept falling out of his cot. The nurses in charge of the ICU would constantly ring Mr Kumar’s family complaining that he would not stay put in bed. “I began to meditate looking at the beautifully shaped bottle of saline. I knew that by strong will power, one could maximize one’s chances of overcoming bleak situations of life. I was somehow convinced that physical strength stems from an indomitable will to persevere and therefore, I didn’t want to spare any effort.”

On the third day, Mr Kumar was seen struggling on the hospital bed. Even though he had tried this several times but failed, now he swore to himself, that today was the day! With all his willpower, he brought his hand around the tube attached firmly to his nose and clawing his fingers around it, he pulled it off and gasped.

Just then, a nurse entered and stopped in her tracks. When she realized what was happening, the note in her hand dropped, and she clasped a hand over her mouth to stop herself from screaming.

“What are you doing Mr Kumar! Stop it!” There was panic in the nurse’s voice as she screamed with monitors beeping loudly.

Mr Kumar did not oblige until he had successfully pulled out all the tubes attached on his body. On seeing this display of willpower, the nurse rushed out and soon his family members were contacted.

Mrs Kumar was worried. She thought that her husband was just trying to breathe on his own without aid from the machine. She guessed he was probably missing his daughters and wanted to come home.

Mr Kumar extended his 45-days visa to 90 days to undergo rehabilitation. His nears and dears had lost all hopes. However, when he got back, his wife and children were happy to see him back at home, and he was overjoyed. Being reunited with his friends and family gave him much joy and peace of mind, and slowly he began to regain his voice and swallowing function.

Alas, this happiness was short lived for the Kumar’s family as he woke up one day only to discover that he couldn’t see clearly from his  left eye. It started from the second month of getting back to India. What started deteriorating gradually, became so much worse suddenly. 

The hospital was contacted and it transpired that the loss of his vision was as a result of a long-term effect of an exposed cornea, but the doctor had neglected to mention that.

Mr. Kumar  regretted bitterly. “Even though I am lucky and happy to be alive, but the catastrophic errors of omission, negligence and delay were entirely preventable.”

Radhika, Mr Kumar’s daughter, shook her head in disbelief. Seeing her father would not be the same again was like a hole in her heart that would never heal. She was disappointed at the sub-standard operating procedure of the whole medical fraternity.

“This would never have happened if they had done the right thing, but they didn’t!” She snapped at the nurses and doctors, her voice quavering. “All these could have been prevented if they had just done what they were supposed to do! Now my father is a half-blind man!”

The dangerous aftermath of mere assumptions and false re-assurances to the patient cannot be  overemphasized. If he had been diagnosed in time, a small surgery would have probably given him much better quality of life. Radhika continued, “Since the last 18 years, Daddy manages with a walking stick with a weak left side. He has developed several infections on his left cornea. He has undergone two operations on his eye and one corneal transplant in the USA 2 years ago. Even though he is always tough from the inside, it has taken a big toll on him. He is a living victim of medical blunders and miscommunications.”

His daughter was regretting the memories of those yesteryears when the lack of professionalism in the hospitals was solely and squarely responsible for her father’s present predicaments.

“The quality of my dad’s life has deteriorated, and I see his spirit has been dented with a big blow. The once lively man with a strong will power has been made a pale shadow of himself. He walks around using a stick to support his weak left side and has gotten mugged on so many occasions.”

Analysis

In this case, there were two missed windows of opportunities. The first one was when Mr Kumar presented to his doctor for the very first time with the symptoms, which were one of the red flag symptoms (mentioned below). The physician should have taken cognizance of the symptom and should have expeditiously investigated it. Falsely reassuring the patient proved to be a costly mistake. This is a classic example of an act of omission.

The second missed window of opportunity was when the tumor was partly resected and the surgeon failed to communicate this to the patient regarding the tumour left behind, and its future implications. The surgeon should have explained the full technical details of the procedure. The minimum expectation under this circumstance would have been to  implement aggressive post-operative monitoring of the tumour, and refer the patient to higher centres for further treatment or/and advise a second opinion, to ensure that any further growth is picked up at the earliest opportunity providing the best possible survival and quality of life. Hiding the facts about incomplete tumour resection from the patient was not only unprofessional but also resulted in Mr Kumar paying a high price with life-long physical disabilities like blindness, paralysis, hearing loss with a considerable financial strain.  

Here is the list of 16 red flag symptoms that one must never ignore:

• Unexplained bleeding
• Unexplained weight loss
• A lump or swelling
• Feeling weak or fatigued
• Poor appetite or feeling full after a small meal
• Bloating sensation in tummy
• Prolonged fever
• Pain, diminished or altered sensation in any part of the body or weakness
• Cough or shortness of breath, blood in cough
• Unusually heavy and painful bleeding in women especially in-between periods.
• Difficulty in swallowing or heartburn
• Unexplained change in bowel habit towards looser stools, feeling of incomplete bowel emptying after motion
• Blood in the stools
• Blood in the urine
• Development of a new mole or changes to the existing mole regarding size, shape, colour, crusting of mole or bleeding.
• Problem(s) in urination, e.g. the need to urinate urgently or more frequently, painful urination and poor stream of urine.

What are the symptoms against the diagnosis of cancer?

• The symptoms which are present for ages, for example, years to decades without any progression or deterioration.
• The symptoms which are short lasting and self-limiting, such as pain in the back lasting for 1 or 2 days.
• Young age without any family history of cancer. Less than 1% of major cancer categories affect people under the age of 40.
• Painful swelling – pain is not a common sign of cancer. Pain is a sequela of infection or inflammation. If the pain is the only symptom, the chances for cancer is less likely.
• Being a non-smoker – smoking is the single largest preventable cause for at least 14 cancers including lung, stomach and bowel. Lack of previous history of smoking reduces the chances of cancer in a person even though it can’t be guaranteed.
• Symptoms in isolation – certain symptoms in isolation are less commonly associated with cancer, such as or only headache, only constipation or only breast pain.
• Normal appetite and stable weight – if a person has got a regular appetite and stable weight, it is a good sign against cancer. However, there is no guarantee.

The human body consists of nicely regulated systems such as the digestive system, etc which coordinate with each other in a phenomenally smart way. There is built-in feedback mechanism within the body to alert the individual about any changes that need to be paid attention to. While there are some changes that can be ignored, for example, greying of hair, there are some that that need attention such as constipation secondary to poor diet planning.

However, there are other red flag symptoms which need urgent attention, consultation and work up. A red flag symptom is like the built-in siren of the body. Just as an emergency alarm indicates the need for an action plan for a house on fire, such as an emergency evacuation procedure for the occupant of the house – one cannot similarly live in self-denial or procrastinate that there is no fire. Like a quick action plan, urgent attention is required for the red flag symptoms without delay.

The red flag symptoms are also like the timer of a ticking time bomb. When the house is on fire, the time and speed is of the essence. Treatment and prognosis are all dependent on the stage of the disease. Early diagnosis could very well mean smaller tumor size and better prognosis with the highest chance of survival.

Some of the common reasons why people ignore these red flag symptoms.

• People think this is one of the symptoms like flu which will come and go.
• I am too busy right now.
• One day I will take an appointment with my doctor.
• Let me try some over the counter medications.
• I think this is caused by what I ate last night.

What should one do when one has a red flag symptom?

• Take note of the details of your symptoms, such as when it happens, what happens, what are the trigger factors, the evolution or progression of your symptoms, and any associated signs. Take pictures if necessary.
• Make an earliest possible appointment with a specialist.
• Undergo all the investigations in an expedited way.

If the physician or surgeon ignores your symptoms or gives you false assurance, then don’t hesitate to take a second opinion.