February 22, 2011
Dear Dad. I really cannot wait to see you. To be with you in person. All these letters are great and our short chats mean so much to me. But, oh to see you again, even just for a few minutes. Things are much better in some ways and worse off in some. I know that grief may seem like a small word and it is strange that such a small word can carry with it extensive familiar emotions. If we have not been introduced to grief, then I think we have not yet grown. The past two days have been a little rough, staying positive and keeping my mind occupied with daily tasks has been intruded upon by a little lump on my back. It bothers me that it is in a straight invisible line from the surgical wound (from my VP shunt) that I have on my chest and it bothers me even more that it hurts, a lot. It has reintroduced the pain I used to feel just after surgery, and yet, after such a major surgery, it is a waiting game to see when and how the lump can be removed. Yes, where is all that positive thinking when you need it the most? Where are you, when I need you most?
A small part of me feels like grief is trying to slide itself through my window again, no matter how tightly I have shut it. That this lump may mean something bigger and my biggest fear of having a second shunt surgery may materialize. Then, there is this other bit inside me that insists on having faith in God and in the belief that everything will be fine. How can it can get any worse from having brain surgery? A cartwheel of emotions indeed.
Am I fearful of grief? A little, Dad. Even before I finish this letter to you, you know how I have had one too many long walks with grief to know that it walks hand in hand with loss. It leads you on a path of self-discovery and it builds your character but with so much that has happened, I fear that I may not be able to handle anymore. I met grief at a very young age. At the age of three, I lost one parent to a situation we could not control and I lost the other to indifference.
I grew up being repeatedly told that I was never good enough, that I would never amount to anything more than a street sweeper. Also that the mistakes I made were so grievous, that standing up for me was not worth it. Everybody else was worth listening to, I wasn’t. On more than one occasion, even as I was ferried between this house and that home being told off for the things I forgot to pack, I have been forgotten at a piano class or after school activity and this often meant waiting alone, hoping that I was not that invisible. So, yes, grief was a regular bedside companion the many nights I cried myself to sleep thinking one day, all this will be just a dream, that I too, would have a Daddy Warbucks somewhere out there. That you would come back, rescue me and it will be perfect again. But grief had other plans, Dad, as we all know.
When I was six, grief had me very confused. If anything, grief taught me grown ups make mistakes too and nobody, and I mean nobody is perfect. I had something precious taken from me. Something that a million dollars would never be able to restore. I would feel guilt, shame and blame for a long time before realizing that the sexual impropriety I had experienced was not my fault. It would make me more aware of people who think they can make you feel small just so they can gloat in the sensation of awe they have, for themselves. And it would teach me that self-pity is a dish best served with stupidity because you will never move yourself forward emotionally and mentally.
Grief came and sat by my side when at the brink of receiving a much awaited internship, I was diagnosed with a rare and incurable condition, Pseudotumor Cerebri. Half of it seemed like a joke. And the other half was mental and emotional anguish I could not cope with. My first lumbar puncture. My first sense of losing control. There were days when I would rather sit still just so I would not have to show people that I could not see out of my right eye. The days when my memory would get so mixed up, I have had to accustom myself to writing things down. The excruciating seven years of lumbar punctures that had me thinking, if this is what it meant to move forward in medicine, somebody, somewhere must be slacking off their research. Grief enveloped me when my first, real four year relationship ended because the condition was too difficult for him. Talk about transference.
Holding the pieces together and trying to put up a strong front often meant more pieces falling apart and grief being a full time companion. Grief lingered through the betrayals of so called friends who stayed to gain for their benefit and left when the benefits wore out. It was a much needed wake up call, I do not wish on anyone, but hope that each of us will learn, it is true, the best of friends will stay when the rest of the world walks out. Grief was a constant bystander in so many situations when I have tried to explain my medical condition not for the sake of sympathy but so I would be understood, instead I was constantly greeted with, “it is your brain, so you must be crazy”.
Even as I prayed for a non-eventful VP Shunt surgery, grief held my hand ever so tightly when I thought about how monstrous I must look and how I wished I had not taken so many little things in my life for granted. A very close friend once told me, that if I have had to deal with all this, there must be some grand reward tucked away somewhere. That God she further explained cannot allow so much to happen and not bless me with anything good.
It took me a while but I realized the reward was not tucked away anywhere in some secret corner. It was right in front of me. My blessings are outnumbered, in the few people that are living proof that there is such a thing as unconditional love. In the fact, that my very special journey is far from over and in the simple knowledge of knowing, there are more blessings to come. I love you Dad, always and always.
EPILOGUE
The park appears resplendent in full bloom. Anya sips in the breathtaking view, the shades of purple, pink, white and red from the flowers, the clear blue of the skies, the pure white from the cottony clouds ... it seems almost like she has stepped into a magical watercolour painting. It is the perfect day for a picnic and she has perfect company too. Anya may not realize it but she looks just as beautiful in her white dress and that little bit of colour in her cheeks makes such a difference to her already glowing face. All around, it seems like Spring is here to stay and will never ever leave again.
After all this time, she can’t believe that she is finally with him again.
This is the same man who has held her hand time and again. Whose gentle voice has offered light in the darkest of hours. This is the person who can make her laugh when she needs to, even if she does not want to. Literally, this man gave her life. Her father.
They have an emotion filled reunion that might draw a tear from many a passerby. But they have the park to themselves today. Such an intense reunion can only mean that they had an even more intense separation. They spend hours and hours talking, revisiting some of her letters and their few but very cherished memories. They laugh, cry and laugh some more.
Anya takes a long, breath. It has been such a long journey to get here.
She leans against a tree and closes her eyes. She breathes in the freshness of the sights and sounds around her. She wraps herself in the love and forgiveness she feels from this very special man in her life. Anya sighs.
Could death really be this peaceful? Is heaven really this beautiful?
No more questions. She does not need the answers anyway. She is with him again, that is all that matters.
The End
About the author
International best-selling author, Pandora Poikilos has been writing for more than 10 years for various media which include newspapers, radio, television and various websites.
A social media enthusiast who is passionate about blogging and finding her way around the virtual world, she wills away time in the real world by reading, writing and people watching. Read more at pandorapoikilos.com
BENIGN INTRACRANIAL HYPERTENSION
Sourced from Wikipedia.com under their Creative Commons Attribution-Share Alike License
Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased
intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are headache, nausea and vomiting, as well as pulsatile tinnitus (buzzing in the ears synchronous with the pulse), double vision and other visual symptoms. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss.
IIH is diagnosed with a brain scan (to rule out other causes) and a lumbar puncture; lumbar puncture may also provide temporary and sometimes permanent relief from the symptoms. Some respond to medication (with the drug acetazolamide), but others require surgery to relieve the pressure. The condition may occur in all age groups, but is most common in young women, especially those with obesity.
What Causes it?
“Idiopathic” means “of unknown etiology”. Therefore, IIH can only be diagnosed if there is no alternative explanation for the symptoms. Intracranial pressure may be increased due to medications such as high-dose vitamin A derivatives (e.g. isotretinoin for acne), long-term tetracycline antibiotics (for a variety of skin conditions) and hormonal contraceptives. There are numerous other diseases, mostly rare conditions, that may lead to intracranial hypertension. If there is an underlying cause, the condition is termed “secondary intracranial hypertension”. Common causes of secondary intracranial hypertension include obstructive sleep apnea (a sleep-related breathing disorder), systemic lupus erythematosis (SLE), chronic kidney disease and Behçet’s disease.
How is it treated?
The primary goal in treatment of IIH is the prevention of visual loss and blindness, as well as symptom control.[5] IIH is treated mainly through the reduction of CSF pressure and, where applicable, weight loss. IIH may resolve after initial treatment, may go into spontaneous remission (although it can still relapse at a later stage), or may continue chronically.
Lumbar Puncture
The first step in symptom control is drainage of cerebrospinal fluid by lumbar puncture. If necessary, this may be performed at the same time as a “diagnostic” LP. In some cases, this is sufficient to control the symptoms, and no further treatment is needed.
The procedure can be repeated if necessary, but this is generally taken as a cue that additional treatments may be required to control the symptoms and preserve vision; repeated LPs are regarded as unpleasant by patients. Repeated LPs are sometimes needed to control the ICP urgently if vision deteriorates rapidly.
Medication
The best studied medical treatment is acetazolamide (Diamox), which acts by inhibiting the enzyme carbonic anhydrase and reduces CSF production by 6–57%. It can cause the symptoms of hypokalemia (low blood potassium levels), which include muscle weakness and tingling in the fingers. Acetazolamide cannot be used in pregnancy, as it has shown to cause embryonic abnormalities in animal studies, and in humans has been shown to cause metabolic acidosis as well as disruptions in the blood electrolyte levels in the newborn. The diuretic furosemide is sometimes used if acetazolamide is not tolerated, but this has little effect on the ICP.
Various analgesics (painkillers) may be used in controlling the headache. In addition to conventional agents such as paracetamol, a low dose of the antidepressant amitriptyline as well as the anticonvulsant topiramate have shown some additional benefit for pain relief.
The use of steroids to reduce the ICP is controversial; they may be used in severe papilledema, but otherwise their use is discouraged.
Surgery
Two main surgical procedures exist in the treatment of IIH: optic nerve sheath decompression and fenestration and shunting. Surgery would normally only be offered if medical therapy is either unsuccessful or not tolerated. The choice between these two procedures depends on the predominant problem in IIH. Neither procedure is perfect: both may cause significant complications, and both may eventually fail in controlling the symptoms. There are no randomized controlled trials to guide the decision as to which procedure is best.
Optic nerve sheath fenestration is an ophthalmological operation that involves the making of an incision in the connective tissue lining of the optic nerve in its portion behind the eye. It is not entirely clear how it protects the eye from the raised pressure, but it may be the result of either diversion of the CSF into the orbit or the creation of an area of scar tissue that lowers the pressure. The effects on the intracranial pressure itself are more modest. Moreover, the procedure may lead to significant complications, including blindness in 1–2%. The procedure is therefore recommended mainly in those who have limited headache symptoms but significant papilledema or threatened vision, or in those who have undergone unsuccessful treatment with a shunt or have a contraindication for shunt surgery.
Shunt surgery, usually performed by neurosurgeons, involves the creation of a conduit by which CSF can be drained into another body cavity. The initial procedure is usually a lumboperitoneal (LP) shunt, which connects the subarachnoid space in the lumbar spine with the peritoneal cavity. Generally, a pressure valve is included in the circuit to avoid excessive drainage when the patient is erect and therefore has a relatively high ICP.
LP shunting provides long-term relief in about half the cases; others require revision of the shunt, often on more than one occasion—usually due to shunt obstruction. If the lumboperitoneal shunt needs repeated revisions, a ventriculoatrial or ventriculoperitoneal shunt may be considered. These shunts are inserted in one of the lateral ventricles of the brain, usually by stereotactic surgery, and then connected either to the right atrium of the heart or the peritoneal cavity, respectively. Given the reduced need for revisions in ventricular shunts, it is possible that this procedure will become the first-line type of shunt treatment.
In cases of severe obesity, gastric bypass surgery has been shown to lead to a marked improvement in symptoms.
When was it first diagnosed?
The first report of IIH was by the German physician Heinrich Quincke, who described it in 1893 under the name “serous meningitis”. The term “pseudotumor cerebri” was introduced in 1904 by his compatriot Max Nonne. Numerous other cases appeared in the literature subsequently; in many cases, the raised intracranial pressure may actually have resulted from underlying conditions. For instance, the “otitic hydrocephalus” reported by London neurologist Sir Charles Symonds may have resulted from venous sinus thrombosis caused by middle ear infection. Diagnostic criteria for IIH were developed in 1937 by the Baltimore neurosurgeon Walter Dandy; Dandy also introduced subtemporal decompressive surgery in the treatment of the condition.
The terms “benign” and “pseudotumor” derive from the fact that increased intracranial pressure may be associated with brain tumors. Those patients in whom no tumour was found were therefore diagnosed with “pseudotumor cerebri” (a disease mimicking a brain tumor). The disease was renamed “benign intracranial hypertension” in 1955 to distinguish it from intracranial hypertension due to life-threatening diseases (such as cancer); however, this was also felt to be misleading because any disease that can blind someone should not be thought of as benign, and the name was therefore revised in 1989 to “idiopathic (of no identifiable cause) intracranial hypertension”.
Shunt surgery was introduced in 1949; initially, ventriculoperitoneal shunts were used. In 1971, good results were reported with lumboperitoneal shunting. Negative reports on shunting in the 1980s led to a brief period (1988–1993) during which optic nerve fenestration (which had initially been described in an unrelated condition in 1871) was more popular. Since then, shunting is recommended predominantly, with occasional exceptions.
On average, IIH occurs in about 1 per 100,000 people, and can occur in children and adults. The median age at diagnosis is 30. IIH occurs predominantly in women, especially in the ages 20–45, who are four to eight times more likely than men to be affected. Overweight and obesity strongly predispose a person to IIH: women who are more than ten percent over their ideal body weight are thirteen times more likely to develop IIH, and this figure goes up to nineteen times in women who are more than twenty pe
rcent over their ideal body weight. In men this relationship also exists, but the increase is only fivefold in those over 20% above their ideal body weight.
Despite several reports of IIH in families, there is no known genetic cause for IIH. People from all ethnicities may develop IIH. In children, there is no difference in incidence between males and females.
It is not known what percentage of people with IIH will remit spontaneously, and what percentage will develop chronic disease.
IIH does not normally affect life expectancy. The major complications from IIH arise from untreated or treatment-resistant papilledema. In various case series, the long-term risk of ones vision being significantly affected by IIH is reported to lie anywhere between 10 and 25%.
Who can help you?
The Intracranial Hypertension Research Foundation
6517 Buena Vista Drive
Vancouver, Washington 98661 U.S.A.
Telephone: 360.693.IHRF (4473)
Fax: 360.694.7062
[email protected]
http://www.ihrfoundation.org/
Excuse Me, My Brains Have Stepped Out Page 14