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Old 06-12-2020, 03:39 AM #1
AnxiousAndConfused AnxiousAndConfused is offline
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Default Newly diagnosed and treated with surgery - don't know how long I have had this

Hi.
I've just been diagnosed (and treated via what seems to have been "emergency" brain-surgery within 24 hours of the diagnosis!) in my early 50s.

What is disturbing me is that I very strongly suspect I may have had the condition for decades already (been struggling with multiple 'medically undiagnosed symptoms' since my 20s- symptoms that seem alarmingly similar to those I am now reading are common with hydrocephalus.

Apart from the increasingly severe headaches of the last 5 years (which are what led to the CT-scan that got me the diagnosis and immediate surgery) - I've also suffered for 25 years from a kind of 'chronic fatigue' that took the form of a feeling of unbearable pressure in my head and the sensation that the blood supply to my brain was being slowly constricted. I could almost 'feel' my brain-cells dying from lack of oxygen.

I would yawn constantly and continuously throughout the day, get dizzy-spells, find myself unable to think, and even resort to standing on my head in a desperate attempt to force blood into my brain. Sleep was an escape from the torture, but it would begin again the instant I woke up, then get progressively worse throughout the day.

"It feels like some sort of intense pressure in my head is constricting the bloodflow to my brain" is pretty much word-for-word how I described it to doctors, repeatedly, during the 20 years it tortured me. Given what I've been reading since coming out of hospital, I'm a bit puzzled now why none of them ever seemed to have a clue what I was talking about, and never even considered hydrocephalus as an explanation but instead just offered me anti-depressants or sent me for CBT.

My hydrocephalus, it turns out, was caused by a congenital colloid cyst (now surgically-removed) - so while the cyst would have been there from birth, I have absolutely no idea when the hydrocephalus itself began. All I know is that I've been having those (and other) symptoms for a very long time, and that by the time I got a CT scan that revealed the condition, the hydrocephalus was already "life threatening".

I find I am now obsessed with trying to work out which of my long list of past "medically unexplained symptoms" were in fact caused by this condition.
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Old 06-12-2020, 10:27 AM #2
AnxiousAndConfused AnxiousAndConfused is offline
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Insofar as I have an actual question, it's is there any way I can ever know when the hydrocephalus started and what effects it has had?

(The cyst was 16mm in diameter when discovered, if that's relevant).

The other debilitating long-standing symptom I have had (since my late teens) is hyperactive bladder. Which I also read is a common symptom of hydrocephalus.

Having two such symptoms, with no other explanation or diagnosis ever forthcoming for either of them, despite decades of investigation, really leaves me wondering if it could possibly have been this all along? But I have no idea how I can find the answer to that.
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Old 06-12-2020, 03:29 PM #3
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Hi AnxiousandConfused

Welcome to NeuroTalk; I hope you will find the community both knowledgeable and supportive .

This Powerpoint presentation may help you in the context of hydrocephalus and a hyperactive bladder.

http://www.hydroassoc.org/docs/2012-...dderIssues.pdf


Best wishes.
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Old 06-12-2020, 11:42 PM #4
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Thankyou. Though as it happens, that is actually one of the sources I previously stumbled on when searching. It explains the mechanism of the process, and the desciption seems to fit what I've been struggling with for 30 years, and what the urologists found. But in fact almost everything I've found about hydrocephalus has mentioned 'over active bladder' as a symptom.

It is just extremely distressing and anxiety-inducing to think one may have been suffering progressive brain-damage for many years.

Both because it feels like it explains my past problems (that I've been told a thousand times 'have no physical explanation' and are just due to my 'negative thinking patterns' or my 'not recognising or dealing with my emotions'), and because I still have a lot of disabling physical issues (like seeming to stop breathing when I sleep, and waking up horribly dizzy and extremely nauseous, and having trouble swallowing and speaking as if my throat were half paralyzed, plus that crippling blood-starved-brain feeling, plus that bladder thing is still there).

I have spent over 30 years feeling myself get progressively more ill for unknown reasons, and gradually having all the things that I find motivating or purposeful being taken away (the ability to study, to work obsessively at an intellectually-demanding job, to travel, to get fit). And now it looks possible there maybe _was_ a physical reason for my increasing disabilities all along, despite what mental-health people kept telling me, just that nobody did the right test to see it until this year.

But I just don't know for sure how long I've had the hydrocephalus or what damage it has done. Perhaps I'm over-reacting and over-interpreting? The state of not-knowing is really hard to bear.
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