CAVERNOUS has a minion!

Does the Brain Matter

Here you are again, inside the witching hour.

Sitting on the bathroom floor with tears in your eyes, you hold your head in your hands, and you struggle not to wretch and vomit. You’ve gotten used to headaches over the years but you would swear on your life this is different.
It happened once a month or so ago. It had happened once before then… both times, strangely enough, inside the witching hour.
You shake your head and laugh to yourself.

Maybe you need help this time. Things intensify. Here you are again,
leaned over the toilet with eyes closed tight, trying to hold on to the seat rim. You awoke from a dead sleep with a slight fever, a pounding head, and a touch of nausea. Rampant vertigo nearly got the best of you on the way here but you made it to the floor on your own accord this time. Small victories.
Today wasn’t different than usual -- you’re complaining to yourself now --
you took care of yourself! You drank plenty of water, you ate a decent lunch.
Sure, you felt a little sluggish, but since when is that unusual? For you?

In through the nose -- you count three seconds -- out through the mouth.
It feels like what is inside your skull is suddenly, inexplicably too big to fit.

You’re not trying to be dramatic but it feels like your brain is pushing, pushing, pushing outward. The pressure is so intense. You would do almost anything to make it stop. Please make it stop! No, you’ve never been one for dramatics,
but you’re convinced your head may honestly explode this time.
What a way to go, you want to laugh, but the smile doesn't come.

The advocating voice inside chimes: this just can’t be normal!
"No one else gets this…" you quietly whine to yourself.
You really want to scream, "no one feels this way!"
Here comes the moment again: You've forgotten. Where are you?
Just inside of the witching hour, swirling colors violently fade to gray.

You hear your cats circling and the eldest licks your toes.
He knows you hate that. An awareness sweeps over you.
You’re lying on the floor, covered in a cold sweat,
your limbs are shaking uncontrollably, tears pour over your cheeks.
And you don’t know why, as you're stifling the sobs --
and to be quite honest, you don’t think anyone cares --
that you're here, yet again: dying inside the witching hour.

INFORMATION

CAVERNOUS MALFORMATIONS are rare clusters of both minuscule and large, thinly-walled, stretched-out blood vessels located within the brain, spinal cord, brain covering, or cranial nerves. Commonly referred to as CavMals or CCMs, they can also be known as cavernomas, cavernous angiomas, cavernous hemangiomas, or intracranial vascular malformations.

The term “angioma” is typically used in context to imply a propensity for or evidence of growth often associated with the hereditary form of the illness. The familial form applies to about 20% of all known cases. In these cases, genetic mutation is regarded as the cause of the formation. Otherwise, what causes CCMs to occur in healthy bodies is presently unknown.

SYMPTOMS

When symptoms occur, they relate directly to the location of the malformation, the flow of blood within the lesion, the strength of the vessel walls, and/or the size of the pool of blood that occurs during a destabilization of the lesion. Mild symptoms may be experienced throughout a lifetime, while periods of intense symptomatic suffering due to changes in bleeding and the reabsorption of blood may also occur.

Potential Symptoms:
Seizures, strokes, loss of consciousness, weakness in one or more limbs, numbness, tingling, hemiparesis or partial paralysis, nerve damage which may be permanent, loss of motor functions, vision problems such as diplopia, blindness, or sensitivity to light, difficulties with balance and coordination, neurological issues, memory deficits, cognitive and learning deficits, attention deficits, headaches both mild and severe, intermittently increased intracranial pressure, and unfortunately, much more.

Still, many CavMals are discovered in patients incidentally, and may never cause their hosts any symptoms within a lifetime. It is guesstimated that a host has an approximate 0.4% chance in any given year that a malformation will destabilize or cause any medically noteworthy symptoms. What causes these lesions to fluctuate or destabilize is not yet known.

DIAGNOSIS

Magnetic resonance imaging (MRIs), with and without contrast, and/or with gradient-echo sequences, remains the best means of diagnosing cavernous malformations regardless of the suspected location of the lesion. As blood flow through these lesions is thin and slow, they will not show on an angiogram, and may be easily mistaken for benign cysts or other anomalies on a basic CT scan.

CavMals and another disease, Multiple Sclerosis, can cause eerily similar symptoms and are often mistaken or misdiagnosed for one another initially, as the imaging can appear quite similar. It is best practice to thoroughly review your medical history and all symptoms experienced with a neurologist or neurosurgeon to help guide your diagnosis. It is also recommended to repeat MRI scans annually to monitor the lesion once discovered. MRI scans should be performed more frequently if symptoms or destabilization occurs to analyze bleeding and resorption -- every 3 months to monitor progress, every 6 months for 2 years following resorption, and annually thereafter unless otherwise needed.

TREATMENT

Since all clinical cases of cavernous malformations differ widely in scope and considerations, the treatment options for them vary greatly per patient.

Be sure to thoroughly discuss ALL OPTIONS with your neurological team, neurologist, and/or neurosurgeon. Keep your general practitioner and any other medical professionals you see regularly in contact and up-to-date about your case. Each person requires an individualized, case-specific approach to treatment, which may include monitoring, medications, radiation, physical therapy, and/or surgery. Never be afraid to obtain a second opinion on your case or to ask many, many questions until you are equally comfortable and confident with your treatment plan! Always be your own best advocate and it is often a good idea to involve your immediate family or friends to help you assess your situation personally.

Treatment of incidentally discovered, asymptomatic lesions is rare, as the consequence of hemorrhage from these CavMals is considered less dire. These lesions should be monitor annually with MRI scans for at least two years, with continued monitoring every five years thereafter, unless new symptoms or evidence of hemorrhage occurs.

For symptomatic lesions, surgery may be proposed, but should only be considered in those who have a lesion in a low risk, easily-accessible area of the brain or spinal cord. In these cases, the location should be such that complete removal of the artifact is both highly achievable and comes with minimal risk to quality-of-life. Surgical removal may also be considered for patients who experience seizures as a direct result of the CavMal and for whom medications cannot successfully control said seizure episodes.

For symptomatic lesions found in more delicate centers or areas of the body or brain -- such as Korin’s -- surgical removal should ONLY be contemplated within the context of preserving life versus loss of life. Risks to nearby tissue, bleeding, intracranial pressure, potential complications, and post-op recovery should all be thoroughly evaluated by a neurosurgical team and discussed with your family/friends. Most symptoms and neurological deficits will worsen significantly immediately following surgical procedures in these cases. If symptoms such as extreme paresis, throat paralysis, blindness, difficulties with swallowing or speech are experienced, extreme caution should be taken prior to committing to surgical intervention. The risks of surgical intervention must always be balanced against the risk of a wait-and-see approach or potential radiation therapy, strictly on an individualized case-by-case basis.



/information to be continued (and perhaps split up a little more?).../
-- proton radiation therapy
-- prognosis / outlook