48 year old battling very rare nerve disorder recovers

A miracle took place in OMNI RK hospital, Visakhapatnam. Yes, it’s true. This is the story of a 48 yr male who was struck with misfortune in the form of a fulminant Guillain barre syndrome presentation – Nodo-paranodopathy (NF 140 positive). This case can be considered as a rarest of the rare disorders considering its severity and the extreme manifestations unleashed by it.

A 48 years male presented with quadriplegia, respiratory paralysis including facial paralysis. The patient couldn’t move any part of his body except his eyes.  His eyes have to speak more than to see as they were his only mode of communication. Initially he was started on treatment with multiple sessions of plasmapheresis followed by a course of IVIg and immunomodulation. However, there was no iota of improvement in the patient, rather the disease has challenged the spirit of the treating doctors by unleashing its evil manifestations in the following days. Patient had developed the most severe form of dysautonomia to the extent of causing dysautonomia even during nebulization which has precluded the ongoing treatment on several occasions. Till date there was no evidence of such an episode of nebulization induced dysautonomia in any patient.

Adding insult to injury, the patient had developed florid bronchial secretions leading to acute hypoxia due to lung collapse on multiple occasions which necessitated emergency bronchoscopy to mitigate the same.

However, today is day 60 of his ICU stay and it is becoming really difficult to believe that he is breathing spontaneously and he is nearing the day of discharge from our hospital.

What makes this patient so special is the amount of endurance the team has to sustain in bringing out the patient from the belligerent jaws of death.

The challenges were myriad but solutions were scarce in handling this patient. Whether in dealing with lethal dysautonomia with close and meticulous monitoring every second for days or in promptly picking and opening up acute collapse of lung, the efforts and conviction of the entire treating team can be compared to someone’s courage in trying to escape from an avalanche just with the aid of an umbrella. Despite knowing the fact that patients had more chances to death than life, the team never lost its hope in delivering best care to the patient. An 80 kg quadriplegic patient not developing a single pressure sore in his 60 days of ICU stay reflects the dedication and diligence of the critical care team. In this context, any statement will be an understatement in praising the critical care nursing and paramedical team for their sincerity and commitment in providing top notch care to the patient. Our efforts started bearing fruits when patient started having spontaneous breaths on 32nd day of his admission into ICU.

The ICU functionality can be comparable to that of the best institutes in the country considering the facts like no pressure sore and no major VAP, providing adequate nutrition and maintaining the physiology of the patient for such a prolonged stay.

This case remains an epitome of team work without which this feat wouldn’t have been possible. The coordinated teamwork spearheaded by Neurologist Dr. Rajkumar Ponnana and critical care in-charge Dr. Rajasekhar.M.A.N with immaculate synchrony and harmony has generated marvellous results. They both not only precisely planned the timely interventions in this roller-coaster ride but also kept motivating the team in this exhaustive journey. Similarly, Dr. Sateesh Chandra Alavala deserves a special mention for his timely intervention and inputs during emergency situations of massive mucus plugging and lung collapse not on one occasion but on multiple occasions.

Furthermore, we were awestruck by the grit of the patient in not giving up and by the faith and trust of the patient’s family in the treating team.

Nevertheless, one has to acknowledge nature’s support, i.e. luck, that has facilitated us in writing a patient’s discharge summary and not otherwise.