My humble prayers to the my Lord with 108 names

O' Aashutosh with vibrations of thy damru created  the Big Bang

Creator of the universe, it's maintenance and sustenance 

Thou instantly fulfil wishes

I beg thou herest my story with patience

O' Bholenath, the innocent one, O' Lord easily gratified, 

O' Bhairav, Destroyer of fear

O' Bhalanetra with an eye in the forehead, I never shed a tear

O' Nataraja, King of Dance,

O' Lokapal, who cares for the world, desiring to please thou beg a chance

Thou art Adiguru, Adinath, Adiyogi

Preacher, Lord and Yogi, the first one

O' Nityasundara the ever beautiful one

Make my life a healthy one

O' Aja, the beginningless, unborn says archaeology

My health was affected as an embryo, a little one says medicalogy

O' Rudra, the roarer is hushed by Bhang

O' Akshayaguna with limitless qualities

Not tolerating atrocities destroying by annihilation

O' Anant Drishti with infinite vision, 

O' Anagha, the faultless one you start another creation

O' Tejaswani, who spreads illumination

Clarity of awareness and heat of concentration

"As the pandemic happened, 

Alleviate the gloom of doom.

Prepare, be aware,

Avoid public places, 

Refrain touching faces, 

Stay clear,

Life is not unfair,

Soon days will be brightened. 

Vaccines are already invented

In jeopardy  may thou stand,

Behind the mask is a pure soul

Her life shall unfold

But by maintaining distance,

Not travelling to any distant land;

Ensuring the safety of the vulnerable, 

In a life sufferable

Thou humans can make it memorable

Being responsible, together us humans stand." 

O' Augadh, the one who reveals all the time

Thou knowest the pain of my lifetime

O' Avyaya Prabhu, Imperishable and sublime

Help me to climb

Life is a vast and big cliff and climbing alone is enjoyable. 

Once you slip at a precarious moment, slide and almost fall off it is unavoidable 

 Doesn't mean "the end" of your story.

O' Bhooteshwara with mastery over the elements

O' Bhudeva, Lord of the earth your appliance drive away ailments

 " Thou ragamuffin! Thou miserable creature!” 

shrieked Meister quite out of breath terribly over the phone.

Thou were protecting me, testing me so I never thought I was alone

Wheezing like an accordion, panting for breath, coughing up blood

I prayed to thou, my God

 The sinister pathogen had not only invaded the lungs but travelled through

My hacking cough and sneezing achoo

 Lymph nodes lower limbs through the lymph nodes making them throb 

Mucus mixed with blood came out in a glob

like the sound of a damru beat,

As I was sitting in my seat

O' Vishwanath, Master of the Universe

Thou Suck out those menacing pathogen like Halahala

Tears of joy came out as I felt gala

O'Vedakarta, Originator of the Vedas you make the annoying brain tumours fade magically 

O' Vishalaksha - Wide-eyed Lord, few people destroying the ecology

O' Bhutapala, Protector of the disembodied beings you magically 

Rid the creation  of Maya, or illusion and  ignorance

O' Dayalu, the compassionate one, with your help we gain experience

O' Chandrapal, Chandraprakash the master of the moon with moon as a crest 

The downhearted, crestfallen needs to be blessed

O' Devadi Deva - The god of gods, bring out our best

A dream of hopes of the pure mind

and

Concentrating on the problems and difficulties

The apt solution thou wilt find 

Absent-mindedness will make thou subject of cruelties

O' Dhanadeepa, Lord of wealth bring equity so the poor get a meal 

Money can buy medication and life and you heal those with a zeal           

 O' Shrutiprakasha, one who has a trident Punish those who cheat and steal

O' Dhyutidhara, Lord of brilliance teach " Help thy neighbour gift love"

Even though your neighbour don't say life is rough

" With Generosity, thy fortune, health, money 

Shall increase, Thou wilt not get inferior,

 by doing thy deeds thou shalt be acclaimed for"

O' Dnyandeep, The light of meditation, A simple act of care can brighten a life

Because hope and help are alike, even if it's not asked for

With fierce, fearless mind climbing uphill to explore

Mother thought as I get troubled in body and mind

My hand slipped

But I gave her a dazzling smile

Tarry awhile 

The mother becomes a fierce Goddess

Climbing in her old age regardless

"Look around you, don't be blind"

She has a perfect handle on the situation

Says,take control, show your strength and comprehension

She said with angelic resignation

 O' Palanhaar thou protect all

 Protecting all my honoured mother needs protection from the agony

I pray to look after her terribly painful knee

 O' Durjaneeya - Difficult to be known, so is the mind of a sufferer for

A person with experience facing struggles to survive nefarious malady

O' Durjaya - The unvanquished

With distress and pain, we travel to unimaginable lands, heroes, victims, martyrs, warriors remain unstoppable,  remain vanquished

O' Nrityapriya, Lover of dance,

O' Parameshwara, First among all gods

 I am your creation

Who hate stagnation

I don't complain, my decision is without Vasuki's help to move Mandar 

O' Digambara - The one who wears the sky as his raiment

O' Gangadhara, Lord of river Ganga I have no whining or mournful complaint

Let those obsessed with money and power 

Realisation dawn 

Life isn't orange marmalade 

O'Jagadisha, Master of the Universe tell them the life is a rose flower

Blooms in your shade

Who don't  know the idea and conception

From cradle to grave deluded by self-deception

O' Mahakala, lord of time for most life and lust are indistinguishable.

 Everyone has a hobby, that of collecting money, hollowness, not reliable

Money and ‘Power’ are the root causes in every act of a felony

Attracted to grandeur with abilities very petty

Afterlife is not Disneyland, will gluttons be able to use their wealth?

O' Mahadeva my Greatest God, my ishtadevata grant me good health

So that I enjoy my remaining days

Not in a haze 

And ensure that I get silver hairs, happiness, miracle, gaiety of aura

O' Girijapati,Consort of Girija like Devi Durga I have decided to fight Asuras

O' Trilokpati,Master of all the three worlds my rage prepares “fight or flight”

O' Mahabuddhi, Extreme intelligence with your motivation I wrote

Adventures of Mum and Princess also Midnight 

O' Gunagrahin, Acceptor of gunas ratify my level of ability, skills, talents

O'Gurudeva,The great Guru, O' Hara - Remover of sins peel off the tentacles

Of sins, forgive my sins, offences of my past life

Ending my strife

O' Jaradhishamana,Redeemer from afflictions end sufferings or end life loftily

Put me in a place where there is mountains of books trees bearing dark chocolates and flowing brook of coffee

O' Jatin, Kailashadhipati, Kailashnath the mother whose offspring is suffering

Accept her offering

O' Kamalakshana - Lotus-eyed lord

O' Kantha, Ever-radiant

O' Kapalin - One who wears a necklace of skulls

O' Kedarnath - Lord of Kedar I pray, listen to my mother's prayers

In the puja chamber

  She weeps, which wrings my heart

She deserves more respect than she ever got

O' Priyabhakta - Favorite of the devotees

O' Priyadarshana - Of loving vision

O' Pushkara - One who gives nourishment

Thou bringest life to fulfillment

O' Kochadaiyaan, The lord with long dreadlocks

In hushed bleb not being an idler forged straight ahead, plunged with inertia, in the great emptiness, 

working kinks out, being combative and lifting mountains

Leaping the impasse.

Comes stalemate if a life form gives up negates hope.

Hope stands tiptoe kissing sky

I want to fly

O' Kundalin, One who wears earrings

O' Pashupati Lord of all living beings

O' Lalataksha - One who has an eye in the forehead

O' Lingadhyaksha - Lord of the linga

O'Lokankara - Creator of the three worlds, 

We live in unimaginable realm

Where calmness rules and not overwhelm

Where ruthlessness rules, my mother's softness, aching heart as she wails

O' Mahamaya,Creator of great illusions, my mind reels

O' Mahamrityunjaya - Great victor of death confused and perilous it feels

O'Mahanidhi,Great storehouse ,O'Mahashaktimaya,  with boundless energies

We thrive as spirit flys and joy gleams in eyes after a successful battle

 O' Veerabhadra ,Supreme Lord of the Nether World, where gloomy spirits settle 

O' Umapati, Consort of Uma, but we are ousted, evicted dispossessed

 O' Mahayogi, Greatest yogi we assuage ourselves in a hollow success

O' Mahesha - Supreme lord, O'Maheshwara, Lord of Gods where is

 Land happiness?

O'Nagabhushana, with serpents as ornaments we  trudged uncharted territory

O' Shambho,The auspicious one,O' Swayambhu, Self-created

 I am self-didact, your devotee, naturally, efficiently, critically

O'Shankara Lord of All Gods

Fulfilled with little offering and water poured, Lord of Trinity 

O' Shoolin, Giver of Joy, gaiety instilled in when in despair and utter hopelessness

 O' Panchatsaran the Vigorous one I have Wisdom to choose correctly

O' Pinakin , with  bow in his hand my life isn't purposeless, meaningless

O' Paramjyoti Greatest splendor, I have a mind and courage to face death

              O' Omkara solemnly, reverently, dexterously I climb the hill with strength

O' Vishveshwara,Lord of the Universe, O'Vishwanath, Master of the Universe

 O' Vrishavahana,One who has the bull as his vehicle with calmness intense

O' Trilochana,Three-eyed Lord

O' Trilokpati,Master of all the three worlds

O'Tripurari,Destroyer of the Tripur

O' Trishoolin,One who has a trident in his hands

Fearful fight I have waged with life and death

O' Shantah,Preceptor of Skanda

O' Skandaguru,Illuminator of the vedas

O' Sukhada,The giver of Joy

Jumping with joy, hoping for the elixir 

Thou art deus ex machina my fixer

O' Vajrahasta,One who has a thunderbolt in his hands

All night even after waking  up in the morning,  awful aching head

O' Trilokpati,Master of all the three worlds

O' Nilakantha, The Blue-throated one

O the blues! Weary blues!

                                        O' Ravilochana,Having Sun as the eye

 The strength of will!

O' Shreshtha, Lord of the Moon

O' Shrikantha, Always Pure

Pure heart makes enjoying a life of thrill!

O' Sadashiva, The Transcended one

Being almost bedridden is no perdition

O'Vachaspati, Lord of Speech put words into my mouth when my tongue can't go into motion 

O' Sanatana,The Eternal God

O' Sarveshwara,Lord of All

Aware that someday will soon come when I shall draw no breath 

I fight with fate never screaming in annoyance

O' Varada, Granter of Boons

Grant my wish, I will get the same mother with flamboyance

The truth about Payel Bhattacharya

It Whether you are a patient, a parent, a doctor, a relative, or a medical student, a rare disease will affect you, or someone you know, in your lifetime. 

But my heart was like a sponge, sucking up feelings and emotions, even pain. Born with a soul of a mermaid who could only suffer pain since mermaids have no tears I suffered more acutely. I could hear the voice of the witch " Every step she took was as the witch had said it would be; she felt as if she were treading upon the points of needles or sharp knives." But this is fantasy, let's come to the scientific view behind the pain.

A likely candidate in the brain area to coordinate pain modulation with goal-directed behavior is the frontal lobe. Evidence suggests that the dorsolateral prefrontal cortex, comprising Brodmann areas 9 and 46, 

is important for continuous monitoring of the external world, maintenance of information in short-term memory, and governing efficient performance control in the presence of interfering stimuli. However, the frontal lobe may not have a unitary role in pain processing, as orbitofrontal and medial frontal lesions diminish pain-related behaviors as seen in animals. Frontal lobe activity during pain is generally related to cognitive and attentional processing of painful stimuli. Pain modulation robustly because it requires behavioural flexibility and the ability to suppress prepotent response tendencies to guarantee optimal adaptation. The interaction of the prefrontal cortex with the midbrain, thalamic, striatal, and cingulate structures of the limbic system may thus reflect the active manipulation of the behavioral dominance of pain dependent upon motivational and emotional context.

It is found that the ability to maintain performance accuracy in a short-term memory task during experimental painful muscle ischemia correlates positively with frontal lobe activity measured by event-related brain potentials elicited by the memory stimuli. The ability to suppress prepotent response tendencies to guarantee optimal adaptation. In contrast, acute pain from normal tissue requires less flexible, more habitual reactions to the threat of impending tissue damage. 

As we got to know a prior post prefrontal cortex (PFC) is the cerebral cortex covering the front part of the frontal lobe. This brain region has been implicated in planning complex cognitive behavior, abstract thinking,  personality expression, decision making, and moderating social behavior. The basic activity of this brain region is considered to be the orchestration of thoughts and actions in accordance with internal goals. relates to abilities to differentiate among conflicting thoughts, determine good and bad, better and best, same and different, future consequences of current activities, working toward a defined goal, prediction of outcomes, expectation based on actions, and social “control” (the ability to suppress urges that, if not suppressed, could lead to socially unacceptable outcomes).

So from science back to story. My left foot hurt like I was treading upon points of needles or sharp knives. At that age, I didn't understand or know about my pain. When asked " How do you feel about it? Any pain?" by my parents. My behavioural flexibility suppressed the pain and attained optimal adaptation as with a beaming smile "Good, perfect!" was my reaction. You may wish to know the reason behind it. I am not going to say that's the way I am because my pain never went away and my words were never true.

It is all behind me but the hon'ble reason is of profound importance in my life.

When my brother was born I was twirling in merriment in front of the mirror and fell down. My left foot swelled up like freshly baked bread and a bluish knot appeared.

I was only 3 years of age and my father took me to an eminent doctor who has written a chapter on orthopedic surgery which is taught in the UK.  He used to jab and poke every angle of my body with his son-in-law. Perhaps he was looking for my pains and weaknesses while my father used to sit outside. Wounded, hurt, damaged I wouldn't utter a word when auto-vaccines were jabbed in my butt. I couldn't climb the stairs. I dragged myself up then into the bed. I was never fragile or vulnerable, nonplussed or hurt with a cool attitude, I always said there was no pain thinking this way I might be able to avoid the doctor. It continued for four years when he told my father he has never been a failure but this was the first time. But his unfortunate treatment with cloxacillin made me resistant to plenty of antibiotics.

Another doctor said they'd open up both feet and one said he'll have to do multiple surgeries. Guinea pig at such a young age! 

The unusual birth of the eye-catching child of fond parents after a miscarriage and fet000us getting problems while in the womb, were lost in the thought that behind the outer shell there might lurk some sickness never known to humanity and the ill-fated, ill-starred child would have to endure the worst in all walks of life and face countless challenges my parents never thought of that.

When my Grandfathers asked about my prognosis parents responded, " No she never complains of pain, the doctor says it's just an inflamed swelling at the left foot."

The tumor was black and blue at the metatarsal and many Ayurvedic, homeopathic were sought as my parents were desperate, knowing that option wasn’t really an option at all.

 The quacks poked and prodded but I gave them a sweet smile like I did to everyone else but I shut off my feelings so that I don't explode in pain.

Then ultimately I got a surgical resection at the age of 12. Recently I spoke to the assistant of the surgeon and he mentioned it was a thing to remember then he got carried away saying it was a blood-filled tumor and bled like it was a potential danger then when I mentioned my current brain condition which has happened due to spillage of tumor cells in the brain, he stuttered and stopped but next time I called I heard a curt " Don't disturb now."

Another surgery was done when I was 13 years old and it became debatable between 2 labs where the specimen was given if it's cancer or not.

The neurocutaneous syndrome is a group of neurologic disorders of the brain, spine, and the peripheral nervous system. These diseases are lifelong conditions that may induce a tumor growth inside the skin, organs, skeletal bones, brain, and spinal cord.

These disorders are usually genetic and arise due to abnormal cell development at the embryo stage. The result is characterized by the development of tumours in various parts of the body. Even though some can be diagnosed at birth, most of them do not display symptoms until late. These syndromes cannot be cured, but various treatments can assist to manage the symptoms and any health concern.

On the basis of type, the global neurocutaneous disorder market can be segmented into Tuberous Sclerosis (TS), Neurofibromatosis (NF), Sturge-weber syndrome disease, Ataxia-Telangiectasia (A-T), Von Hippel-Lindau disease (VHL), and others. 

At my time there were no Google or open-source research files. My parents wasted time with practitioners who had too many ignorant, uneducated opinions. Ignorance was everywhere.

I started getting strange feelings or thoughts, like tingling or deja vu, while returning from school crossing at the traffic lights I spotted a white ambassador car which looked familiar and drew me towards it. More commonly, I had an auditory hallucination and I imagined a specter going along with me. It happened from a very early age and still persists. I stood on the roof and saw bubbles of lights floating past. Then I laughed or cried for no reason. I dreamt aliens contacting me. 

Dismissing the symptoms as untrue or psychological. It was insulting and demeaning to have a physician invalidate I was experiencing and I had to go for psychologists treatment. 

Under their treatment, I became repellently fat-like, Mr. Pyecraft with a serious obesity problem.

After my subtotal thyroidectomy, I developed HypoPara and get attacks of tetany. Recently

These hemangioblastomas were found in a routine neck ultrasound.

Next, my mother noticed continual jerkings or spasms of the left leg, usually a leg, and called my father, and both tried application of pressure on the limb to calm it down but it started again. Then my subtotal thyroidectomy was scheduled where it was found that because of my migraines an MRI was done where a tiny spot was found which has grown more than 5 times in a few years.

Supratentorial HB is a rare and benign neoplasm. Very scarce literature is available regarding supratentorial HB. Supratentorial HB, which are quite rare, were first described by Bielschowsky in 1902.

They are most commonly found in the frontal lobe of the cerebrum followed by parietal and temporal lobe. Mine was in the parietal lobe.

 Embolization was necessary before the prior surgery else all will end up like me.

I recall I came into the OT during my craniotomy in 2006 and blood flowing out from under the head and the anaesthesiologist yelling I needed more blood because my hemoglobin was dropping. The doctor didn't take enough care and put me on the verge of uncertainty.

While I was pushed out of the OT in a trolley I was telling Mum there's no sense in the left side. My leg and hand were numb. I couldn't even make a fist. My recovery is always fast and with physiotherapy, I could squeeze a softball and slowly climb the stairs.

I had no idea it was unstoppable.

I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion. I had two episodes of bleeding in the hemangioblastomas and required hospitalization.

The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Immunosuppressants are expensive life-saving medicines. I am on immunosuppressive medicines for life.

The essence behind continuing an immunosuppressive regimen is that the transplanted organ into the body of the host is not similar in genetic structure(DNA) of the recipient.

We have been endowed with a wonderfully complex structure called the immune system to protect us from viruses which are essentially nucleic acid DNA or RNA.

Hence, the immune system not having the capacity to distinguish between a new organ transplanted to save life destroys it instead which results in rejection.

Immunosuppressive treatment begins during the surgery and continues throughout the patient's life. Regular blood tests and other maintenance strategies by which medicines at specific doses are adjusted periodically by constant monitoring to prolong the transplant recipient's life and prevent acute or chronic rejections of the graft.

All immunosuppressants leave the patient more susceptible to infections and less able to fight them off.

Soon after discharge I got viral infection varicella and was treated with Zovirax.

With the visceral tumors putting two and two together I was diagnosed with von Hippel-Lindau (VHL) disease is a hereditary devastating cancer syndrome, predisposing to the development of various benign and malignant tumors (Central Nervous System [CNS] and retinal hemangioblastomas, endolymphatic sac tumors, renal cell carcinoma (RCC) and/or renal cysts, pheochromocytomas, pancreatic cysts, and neuroendocrine tumors, endolymphatic sac tumors, epididymal and broad ligament cystadenomas). VHL disease is the first cause of hereditary kidney cancer.

The von Hippel–Lindau hereditary cancer syndrome was first described about 100 years ago. The unusual clinical features of this disorder predicted a role for the von Hippel–Lindau gene (VHL) in the oxygen-sensing pathway. Indeed, recent studies of this gene have helped to decipher how cells sense changes in oxygen availability and have revealed a previously unappreciated role of prolyl hydroxylation in intracellular signaling. These studies, in turn, are laying the foundation for the treatment of a diverse set of disorders, including cancer, myocardial infarction, and stroke.

The Von Hippel-Lindau disease is different in every patient, even within the same family. Therefore it is very difficult to predict how and when the Von Hippel-Lindau disease will present in the individual. There is no drug available till date to cure the Von Hippel-Lindau disease.

The tumors can occur in ten different parts of the body

• Brain

• Spine

• Eyes

• Kidneys

• Adrenal Glands

• Pancreas

• Liver

• Lungs

• Inner Ears

• Reproductive Tract

I am an MDR- TB survivor with pulmonary, lymph, and bone involvement.

The fun ingredient of life is not only you get bombs in your lungs wherein you gotta lie low hoping they won't go off; they can be diffused by a squad with proper knowledge. Looking forth to sunshine so that the landmines (leptomeningeal hemangioblastomas) don't blow me off with an utter BOOM! 

Fever, cough, is very common for me to get along with allergies. I feel my nose burning in the city atmosphere damaged by pollution.

Then a darkness spread around:

I saw nought; I heard no sound:

Solid darkness overhead,

With a trembling cautious tread

Passed I o’er the unseen ground.~ Cristina Rosetti

Few nights I sleep profoundly but don't find any good reason for waking up in the morning. Instead of the morning sun streaming in through the open windows and sparkling on my bookshelf it feels mostly spooky dead-quiet stillness in the morning haze and everywhere it's smokey and smoke creeping in through the crevices in the ill-fitted window frame.

Then unexpectedly after a tetany attack I got my routine ultrasound of the neck and whole body CT scan and two budding brain tumours were found. I was advised to get a cyberknife before they grow. Just 6 months after cyberknife I got Leptomeningeal Hemangioblastomas.

All patients who underwent primary surgery for HB of the CNS.The median interval from initial surgery on HB of the CNS to identification of leptomeningeal dissemination was 96 months I was diagnosed in 60months.

It is very rare approximately from 1902-2013 only 132 cases have been globally reported. I am not sure if anyone has the same tumours in India. From 2013 I had posted to EURORDIS and Rare disease and never found any.

Because no case of de novo development of disseminated HB without previous surgery has been reported, it is strongly suggested that the spillage and spread of tumour cells through the CSF space may be an origin of hemangioblastomatosis in patients with a genetic predisposition to the condition, Care should be taken to avoid tumour cell spillage during surgery. 

In 2015 it destroyed my right optic nerve and I am partially blind even after killer sessions of radiation therapy. After 2017 radiation therapy of two growing tumours I got trigeminal neuralgia and chronic ischemic brain.

History repeats itself, after Trigeminal neuralgia Mr Pyecraft's humiliating condition haunted my life. 

Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). It is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and other areas on one side of the face. Sometimes there's a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and disabling. If untreated, TN can have a profound effect on a person’s quality of life. In most cases, TN develops due to a blood vessel pressing against the trigeminal nerve, but sometimes no underlying cause can be identified (idiopathic). It can also be idiopathic, due to compression of the trigeminal nerve, or can occur due to a known underlying cause such as a tumor or multiple sclerosis. TN can usually be managed through medications, surgery or injections, or stereotactic radiosurgery. I have a rare bilateral manifestation.

Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

After cyberknife of trigeminal neuralgia in Mumbai I got serious problems.

• I can't stand fall for a long time. My mom is short heighted but she helps me in the house. 

• I vomit suddenly

• I have neck pain and headaches

• Swallowing problem. I got choked on rice and coughed my lungs out. Need to take mostly semi-solid food and have lost 12 kgs since May 2020. Mashed sweet potatoes with boiled salmon or tuna. And spinach soup, oats, strawberries and walnuts made into a puree in the mixer. 

• I bite my tongue while eating or speaking and dentist said to use lidocaine (anesthetic)

• A metallic sound in my ear. 

• I can't hold things properly and drop them

• I have to crush my medicines even Sirolimus to take them.  MyCept which used to be Rs 250/ strip is now Rs 4500 / bottle have been of oral solution.

• Tongue gets paralysed for a day.

• Voice becoming heavier.

It is suspected I have Glossopharyngeal neuralgia (GPN) which is a somewhat rare condition characterized by severe, fierce episodes of pain localized to the external ear canal, the base of the tongue, the tonsil, or the area beneath the angle of the jaw. This pain is many times confused with Trigeminal Neuralgia and mistreated. It is related to hyperactivity of the glossopharyngeal nerve. GPN is rare compared with TN. The pain affects the sensory areas corresponding to the glossopharyngeal neuralgia with a branch of sensory vagus nerves. GPN consists of spasmodic, momentary, and severe sharp pain in the posterior area of the throat, tonsillar fossa, base of the tongue, ear canal, and areas inferior to the angle of the mandible. Generally, the pain persists for seconds to minutes and is often triggered by chewing, coughing, yawning, talking, and swallowing. Since Glossopharyngeal neuralgia is a relatively rare condition There are various diagnostic and management dilemmas.

Glossopharyngeal neuralgia is believed to be caused by irritation of the ninth cranial nerve, although in most cases, the source of irritation is never found.

Rare disease patients and caregivers often shoulder a considerable burden for their disease and find it necessary to educate physicians about their condition and serve as becoming their own advocates.

The complexity of their existence, the trials of maladies forced me to struggle to live.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumor but also the healthy tissue that the beam encounters on its way towards the tumor and beyond the tumor. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumor travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumor.

Life so short, good and great

Some feel joy and bliss in pain

Weariness, toil and threat

Sea of pain and grief

Makes some weak and pale

Bitter life and endless pain

Joy, pain, anger, fear loss, and gain

Keep on taking challenges of the day

Conquer them, your ability will make you float or sink

Don't lose hope because life is brief.

 

Rare diseases require exigent action.

 

Life is like a rose, when it blooms it gives you joy but it has thorns: struggles to be overcome to enjoy the beauty.

Life is so beautiful you don't get tired of living. At times life gets smarter and funnier than you but I feel so lucky even if life hurts me I love this life.

I want a storybook-like ending in my life.

Keeping in mind I was brought up amidst books and am a bibliophile, and there are too many books to read that one lifetime is short even if you live a thousand years.

It's an idyllic life with invisible friends on the pages. Time holds us and moulds us. Mahakal controls the universe.

Sometimes people don't admit that they are wrong because they are too prideful, stuck with their own beliefs but unless you admit you are wrong how do you expect to learn more in a new aspect if you think you are permanently right? Let go of the devilish ego which stops you to approach life with an open mind.

Books are truth, so is life-- a wonderful illuminating journey. Do I have anything besides it?

 If in the middle of the night sometimes I think of wherefores, maybes and perhapses, ergo I decided to leave back those what-ifs and could-have-beens.

I have stopped caring about what others think or say about me. I don't need people's approval because life for me is too short to hold me back. I am not a cretin, I know more than I say, think more than I speak, and notice more than you realize. My thinking apparatus is perfectly functional. All I want is my tangible trace after I  take off.

 I see the positive side of all things, never feared any challenge and faced head-on because going through worse I have learnt to live with my head up high.

Sometimes I repeatedly hear from people " Is it benign or cancer? It could have been worse!" I must say you don't understand until you are in the middle of it. 

Benign tumours and their treatment are just as difficult as cancerous tumours. I am ready to see how they'd react to the skull-shattering pain. 

How would they react when a fellow looking at the picture of the scan of numerous lesions scattered throughout my brain remarks,

" You have more tumours in the brain than people have lice in hair.''

I have never encountered people with such powerful monsters popularly known as leptomeningeal hemangioblastomas.

Would anyone stand with a trophy not knowing what the outcome will be?

In the folklore of science, there's very little information. A healthy life! Ha!Ha!Ha! It's out of the question! I am destined for a never-ending battle for survival.

  Light-hearted promises and hollow assurances have made it a failure to dispel my annoyance. Life simmer with unwavering clarity.

Wild with enthusiasm made me fly off the handle. I am never hostile, I am bold to stand against any sort of injustice or opinion or deed which is not morally good. There's no 'yelling’ and ‘melancholy’ madness.

My anger is like the basic human emotions, as elemental as happiness, sadness, anxiety, or disgust. These emotions are related to my basic survival and were honed over the course of the history of my life. Anger is related to the “fight, flight, or freeze” response of the sympathetic nervous system; it prepares humans to fight. But fighting doesn't necessarily mean throwing punches; it might propel communities to combat injustice trying to change laws and thoughts.

These rare tumours behave like ghosts of survival-endowed cells leaked from the original tumour, you can't detect them in their infancy but as they grow producing symptoms their luminosity is captured in a Gallium Dotanoc scan and you feel a haunted sense of doom. Inferno of noise is always there in the ears, a battle of nerves is the result.

Folks blinked, understood nothing, nothing about anything because it is the absurdest thing that they have heard. When you can't gulp down food a flash of insight that had suddenly enlightened me swallowed up and sized me up. I became the little mermaid without any tears and changing voice also as the witch said " Every step she took was as the witch had said it would be; she felt as if she were treading upon the points of needles or sharp knives.", in my case legs are getting weaker and weaker. Sometimes the diabolical torment makes me throw up. But do you think a profound sense of despair comes over me, and I feel a sob rising in my throat? I feel life is drool-worthy. The knives piercing my throat and I throwing up, Mum and me are slowly getting accustomed to it like my partial vision loss and being blind with the right eye.

 I am alive not just breathing and my thoughts move on with extra enthusiasm and energy and I concocted a cerebral haunting ghost story and my passion for detection made me write the adventures of Mum and Princess, more life-like than any tale of detection ever written. Both are the finest pacy thrillers. Everything I write is quietly, honestly imbued with a sense of my very own individuality. 

They say eyes are windows to the soul. But there's another view required of the world out there and other eyes to give justice. When people betray their own people.

Live intensely in today, and avoid killjoys like the plague. Not knowing what tomorrow holds is a pleasant feeling.

Empathy with humanity in general and zeal of rare patients in a society that bristles with inequality, the suffering of the soul in no way can be replaced, in no way with physical agony brought about by rare disease can get relief unless the common watch over and take care. 

After surviving a life-threatening surgery when the doctor said "Everything is in God's hands" I always felt rewarding and felt good, woohoo! "How many times does this make?" Feels like Tom Cruise's rock-climbing. Life is a vast and big cliff and climbs alone enjoying it. Once you slip at a precarious moment, slide and almost fall off it doesn't mean "the end" of your story. It's like Watson writing about Sherlock Holmes and Moriarty falling in the waterfalls and Holmes sneaking into the room and adding a question mark.

My whole life stands before my eyes like a simmering picture with hypnotic clarity. How I fought the insufferable on the fringes of need and poverty. Mum and I think on the same wavelength without a defeatist attitude.

Do you ever feel like changing, that isn't right? A desire to evolve? I don't get any hare-brained ideas after all the years of reading books, gaining knowledge. I get fits of inspiration.  The essence of genesis is towards becoming but not at a crawling pace. My brand of solace is yearning to know more before my time passes out and I give up to the inevitable. I crave knowledge.

There's nothing more surprising that lots of people get by without reading books. Being a bookworm people's ability not to read is something I can't fathom. I not only read books for entertainment but also science papers to know more about my ailments.

I don't live in netherland, neither am I brainwashed nor can ever be. I daresay I am not lowly cur with manipulative behaviour or dirty tricks to deny the life of someone or steal someone's efforts terminated in pain.

Heartless devils cut down forests and the birds nesting in the branches of the trees fly away to safety but still have an attachment to their own home and abhor the cruelty.

Because of the disappearance of the forests, they think unicorns will disappear from the planet and they won't have to feed them any.

 "Genetic disorders are not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA — this vast genetic library — and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur.  Most are random misprints.

Over the aeons, cells have developed complex mechanisms that identify and correct many of the glitches. But the process is not perfect, nor can it ever be. Mutations are the engine of evolution. Without them, we never would have evolved. The trade-off is that every so often a certain combination will give an individual cell too much power. It begins to evolve independently of the rest of the body. Like a new species thriving in an ecosystem. For that there can be no easy fix."- Does the import sink in that rare diseases requiring exigent action.

Pain in the head

                                      I have pain in the head with heaviness

I experience a unique happiness

Brief moments of depressing, spiritual darkness

Mighty music plays of the triumphal march through the wilderness

I feel alive not just breathing, an impossible passion

Of which people have no conception

Ecstatic, strong, and sweet beyond a shadow of a doubt

A blissful spirit trapped between heaven and earth

 In the oncoming pall of a blackout.

Depression of survival swallows me

Memories flashed like lightning while someone blurted out in a hurry

As the veil was lifted I laughed out loud

Starry-eyed giddiness under the twinkling sky

All agitation, doubts, and worries angry and desperate magically fly

 Head seems to shut down but  a refusal to come plummeting down

Inside the large head a great calm, full of understanding

Yet these moments, these glimmerings, and shadows culminating

The bitterness of underlying the experience, all mysteries flashed 

As a sudden revelation staggering came consciousness 

With a vacant look felt both pain and numbness

Intelligence and knowledge swayed by delusion

It felt like Father came to admonish me for my weakness

Nerves immobilized my tongue and swallowed by confusion

As for the rest, to come to the conclusion

I awoke with pain in the head.