TheBleed

None of this is a call for help, nor is it any kind of alarm.
It is just another reflection about a particular state.


While I can write, I write – there may be a time when writing is no longer available.
Am I trying to be ahead of my time? I remember thinking very clearly that “the true avant-garde is death” – that’s what I thought  in my twenties
This is not the topic here.


It has to do with the fact that there is a possibility that what one calls “brain fog” appears, and remains.
I had a few hours of it today & I wondered how thick it would get. And how persistent it would be.
But here I am, typing all of this down: the panic may not be warranted, but my concern is as thick as the isolation I found myself caught by.

It is not a matter of politeness.


Part of this thick haze consists of the distance between the medical words (the diagnostics) I hear, and the subtle yet concrete fluctuating sensations I am feeling.
All of this comes and goes, and I remain. For now.

This poem by Henri Michaux has been with me for a great many years.
Its refrain, “and he went back to sleep,” is echoing in me.

Much revolves around sleep, and avoidance.
Do we ever face anything else besides what we cannot escape?
The present is the only “stuff/embrace” we may handle…

A quiet man by Henri Michaux –  (my emphasis)
[English Translation by Marton]

Extending his hands out of bed, Plume was surprised not to meet the wall. “Well, he thought, the ants must have eaten it …” and he fell asleep again.

Shortly after, his wife grabbed him and shook him: “Look, she says, lazy you! while you were busy sleeping we were robbed of our house. “Indeed, an immaculate sky stretched on all sides. “Well, the thing is done.” he thought.

Soon after, a noise was heard. It was a train coming at them at full speed. “From its hurried look, he thought, it will surely arrive before we do” and again he fell asleep.

Then, the cold woke him up. He was soaked in blood. A few pieces of his wife were lying next to him. “With blood, he thought,  a great many conflicts always arise; if this train could have not passed, I would be very happy. But since it has already passed … “and he went back to sleep.
– Well, said the judge, how do you explain that your wife injured herself to the point that she was found divided into eight pieces, without you, who were nearby, being able to make a gesture to prevent it, without you even having noticed it. That’s the mystery. Everything lies there.
– On that path, I cannot help him, thought Plume, and he fell back asleep.
– The execution will take place tomorrow. Accused, do you have something to add?
– Excuse me, he said, I have not followed the case. And he went back to sleep.


Original
Un homme paisible par Henri Michaux(mon emphase)

Étendant les mains hors du lit, Plume fut étonné de ne pas rencontrer le mur. ” Tiens, pensa-t-il, les fourmis l’auront mangé… ” et il se rendormit.

Peu apres, sa femme l’attrapa et le secoua: “Regarde, dit-elle, fainéant! pendant que tu étais occupé à dormir on nous a volé notre maison.” En effet, un ciel intact s’étendait de tous côtés. “Bah, la chose est faite.” pensa-t-il.

Peu après, un bruit se fit entendre. C’était un train qui arrivait sur eux à toute allure. ” De l’air pressé qu’il a, pensa-t-il, il arrivera sûrement avant nous ” et il se rendormit.
Ensuite, le froid le réveilla. Il était tout trempé de sang. Quelques morceaux de sa femme gisaient près de lui. ” Avec le sang, pensa-t-il, surgissent toujours quantité de désagréments; si ce train pouvait n’être pas passé, j’en serais fort heureux. Mais puisqu’il est déjà passé… ” et il se rendormit.
– Voyons, disait le juge, comment expliquez-vous que votre femme se soit blessée au point qu’on l’ait trouvée partagée en huit morceaux, sans que vous, qui étiez à côté, ayez pu faire un geste pour l’en empêcher, sans même vous en être aperçu. Voilà le mystère. Toute l’affaire est là-dedans.
– Sur ce chemin, je ne peux pas l’aider, pensa Plume, et il se rendormit.
– L’exécution aura lieu demain. Accusé, avez-vous quelque chose à ajouter?
– Excusez-moi, dit-il, je n’ai pas suivi l’affaire. Et il se rendormit.

Référence: Henri Michaux, Un certain Plume, dans Plume précédé de Lointain intérieur, Paris, Gallimard, 1963, pp.139-140.

The questions continue… of course they mean well, but there is a irreconcilable chasm between what is asked and the immensity of what I could answer, if I could answer anything.
To summarize, just yesterday I was asked whether everything will soon heal; I answered that with blood in one’s head – as Michaux says in one of his Plume stories – all kinds of unpleasant things may happen.

What do I know?!

Brain sensations… sometimes pressure by the eye, sometimes by the ear, hearing the blood flow with every heartbeat. How curious!
A wonderful brain surgeon will check my CTscans! He saved my life in 2008!


Some kind of “antechamber?”
At the very least, I had time to prepare myself… you will say.
It is with calm that a final “curtain” may drop. Without any drama.
People will go back to their busy lives because that’s what life is about: being busy.

Missed opportunities for concrete information.

They mean well, but it is not what was needed:
– my mother was given a Kleenex when she was interviewed by the Shoah Foundation. The interviewer was a therapist, unaware of the history and the geography of WWII genocied in Hungary.
– a well-meaning nurse offered me the same Kleenex as she was “debriefing” me on the damage done (cf. below). I needed facts, not some office-compassion.

To Dr. Michael Chicoine – May He Keep Saving Many More Lives!

From the New York Times

For The First Time, Treatment Helps Patients With Worst Kind of Stroke, Study Says

After three decades of failure, researchers have found a treatment that greatly improves the prognosis for people having the most severe and disabling strokes. By directly removing large blood clots blocking blood vessels in the brain, they can save brain tissue that would have otherwise died, enabling many to return to an independent life.

The study, published online Wednesday in The New England Journal of Medicine and conducted by researchers in the Netherlands, is being met with an outpouring of excitement. One reason the treatment worked, researchers suspect, is that doctors used a new type of snare to grab the clots. It is a stent, basically a small wire cage, on the end of a catheter that is inserted in the groin and threaded through an artery to the brain. When the tip of the catheter reaches the clot, the stent is opened and pushed into the clot. It snags the clot, allowing the doctor to withdraw the catheter and pull out the stent with the clot attached.

“This is a game changer,” said Dr. Ralph L. Sacco, chairman of neurology at the University of Miami’s Miller School of Medicine.

A stent, basically a small wire cage, on the end of a catheter is inserted in the groin and threaded through an artery to the brain. Credit Covidien

A stent, basically a small wire cage, on the end of a catheter is inserted in the groin and threaded through an artery to the brain. Credit Covidien

“A sea change,” said Dr. Joseph Broderick, director of the neuroscience institute at the University of Cincinnati.

About 630,000 Americans each year have strokes caused by clots blocking blood vessels in the brain. In about a third to half, the clot is in a large vessel, which has potentially devastating consequences. People with smaller clots are helped by the lifesaving drug tPA, which dissolves them. But for those with big clots, tPA often does not help. Until now, no other treatments had been shown to work.

The new study involved 500 stroke patients. Ninety percent got tPA. Half were randomly assigned to get a second treatment as well. A doctor would try to directly remove the clot from the patient’s brain. The study did not specify how the removal would happen. There are several methods, but the vast majority were treated with the new stent.

One in five patients who had tPA alone recovered enough to return to living independently. But one in three who also had their clot removed directly were able to take care of themselves after their stroke. And that, said Dr. Larry B. Goldstein, director of the Duke Stroke Center, is “a significant and meaningful improvement in what people are able to do.”

It has been a long road to this success, explained Dr. Walter J. Koroshetz, acting director of the National Institute of Neurological Disorders and Stroke. It began in the 1980s when researchers began testing intravenous tPA. In 1995, when the first large study was published demonstrating tPA’s effectiveness, stroke experts were jubilant. They were left, though, with the problem of helping people with large clots.

Companies began marketing various clot-snaring devices, but there were no studies showing they helped. Using them could be risky — some involved pushing wires through twisting blood vessels that often were damaged already from atherosclerosis, Dr. Koroshetz explained. “You could puncture an artery and if you do and get bleeding in the brain, you have a problem,” he said. Another problem was that sometimes fragments of a clot could break off and be swept deeper into the brain, causing new strokes.

The systems were also expensive. Giving a patient tPA cost about $11,100. Using one of the new devices could cost $23,000, Dr. Koroshetz said.

But some neurologists were enthusiastic. The Food and Drug Administration cleared the first device for clot removal in 2004, allowing it to be marketed. The clearance was granted because the agency considered the device to be equivalent to something already in use — devices used to snare pieces of wires or catheters that might break off in a blood vessel during a medical procedure.

That, other neurologists said, was not at all the same as going into the brain to grab a clot. “There was a lot of controversy,” Dr. Koroshetz said. But the devices quickly came into widespread use. It took time and experience for doctors to learn to use the devices, and not everyone had the necessary expertise.

Even so, said Dr. Diederik Dippel, professor of neurology at Erasmus University Medical Center and principal investigator for the new study, when his study was about to begin, people questioned why it was even needed. “People said why bother with a clinical trial. Just do it,” Dr. Dippel said.

The Dutch study began in 2010. In the meantime, several other large clinical trials testing clot removal were well underway, including one sponsored by the National Institute of Neurological Disorders and Stroke and headed by Dr. Broderick. By 2012, with 650 out of the planned 1,000 patients enrolled, the American study was ended. “Because of futility,” Dr. Koroshetz said. It had become clear that, if anything, those randomized to have their clots directly removed were doing no better.

Two other clinical trials also ended without showing benefit. All too often, attempts to remove clots resulted in uncontrolled bleeding in the brain.

Gloom settled over the field. In the Netherlands, Dr. Dippel said, attitudes about the trial reversed. “Everyone said, ‘Why should we go on?’” Dr. Dippel said.

But the Dutch study happened to start at a time when there were a few key developments that made it possible to hope for success. There was new technology that allowed doctors to quickly assess whether a stroke patient had a large clot and, if so, where it was. In previous studies they tried to guess from a patient’s symptoms. And the stent system for snagging a clot seemed safer and easier to use than previous devices.

The stent system, said Dr. Dippel, “was clearly a better device than we were used to.”

Of course, said Dr. Goldstein, he would like to see the results confirmed with other studies. But, he and others say, that may already have happened. Two other studies like the Dutch one were just ended early because the results were so positive. The data will be presented in February at the International Stroke Conference in Nashville.

Now neurologists are increasingly confident that, at last, they have something in addition to tPA to offer patients.

“I think this is the real thing,” Dr. Koroshetz said.

After my brain hemorrhage, I looked for websites to guide me along. Short of that rare meeting when I could compare notes with another survivor, there was no place on the web to consult. So… Brain Bleed!

To summarize, I went from “hell” (how inadequate a word!) through “wild rides” to a present and constant knowledge of what I call “the arrogance of normalcy” – in other words like with many other disabilities,  I am not “normal” but most people are unaware of that.

So while I am neither a doctor nor a health professional (PLEASE do consult them if you are looking for more than just support – this blog nor its participants are liable for any misinformation), I am starting this site because “someone needs to do this.” This site may re-appear in a different format at a later point.

As the creator of “Brain Bleed” I reserve the right to edit or block any contribution/contributor that I deem not to be contributing to a supportive environment. Disagreement is allowed but, please no flaming, rants or insults. Yes there is uneven care out there but this is not the place to bad-mouth any medical staff.

Below is a mind map I created that may guide me along as I create, time permitting, the various categories to help us all navigate better this rough terrain.

Brain Bleed/Hemorrhage Mind Map ©Marton 2011

Please feel free to comment so I can tweak the mind-map to reflect the community of brain bleed survivors.