I lead a so-called “normal life” except that my father, one day around 6 or 7 in the morning, had died of a brain hemorrhage at the age of 55.
I had wondered whether it had been an earlier trip to the mountains that had precipitated it (or some imagined sexual activity); we did not know nor did any doctor we had spoken to. His blood pressure had not seemed an issue.
With that kind of history a radiologist friend had recommended that I get an MRI of my brain, and I did: an AVM was present, like a knot of small vessels.
The neurosurgeon wanted to operate – either the regular way or with gamma knife. All of it sounded scary – I wanted to leave my brain alone. A neurologist friend had told me that if it were asymptomatic, not to touch it. The AVM could have been present all of my life and may have remained stable until old age.
And I kept thinking of how surgeons may think of surgery the way butchers think of cuts…
Later, I found out that one of my paternal grandfather or great-grandfather had died of a brain hemorrhage and so had one of my father’s sisters.
As time permits, I will try to create each bubble, each phase that connects with surviving a brain bleed, but anyone is welcome to engage with them on their own…
I had not known about this site… am I re-inventing the wheel? We will see whether this parallel effort can complement that great site…
FYI, AVM stands for Arteriovenous Malformation -as per their website – it is a deficiency in the cardiovascular system characterized by abnormalities between the arteries and veins. The affected areas usually lack cell nutrients and become filled with Carbon Dioxide, causing blood to tangle and form malformations. Malformations can occur in different parts of the body, and can cause fatal strokes when the tangled blood ruptures.
They have some good guidelines that I would think would be just right here too:
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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.