Aterio Venus Malformation

All posts tagged Aterio Venus Malformation


Published July 22, 2016 by helentastic67

Face mask 5


So, let’s get to the ‘thing’!

And I’ll premise it by saying, sometimes its good time has passed because I cannot get caught up in the details. Maybe.

And I can streamline the “thing!”

After a period of seeing a few different Neurosurgeons and a period of time thinking I would have to find money to go to Europe to seek treatment because my AVM was deemed surgically inoperable. I was referred to a hospital across town and it seemed the only treatment I could have to ‘fix’ the problem had come to Melbourne and was covered by the Public Medical System! Yeah!

My AVM, still inoperable could be treated with radiation. Asked what to expect?

In simple terms, I was told I might lose some muscle tone, which I was amused by because it told me they assumed I had muscle tone. I thought I had better get to the gym and get some…

They told me my hair would “thin”.

To be clear my definition of thinning and theirs are completely different.

And they asked if I liked reading? Because I might lose some eyesight.

On the upside, I would potentially obliterate the risk of 2% a year I might suffer a stroke, bleed or worse. I’m not a gambler however if it would ‘fix’ the AVM and I would be able to  illuminate the risk of a bleed, stroke, possible death, then my mum and sister were on-board to have the radiation.

Acquired Brain Injury

Published April 15, 2016 by helentastic67

Aquired brain injury 1


Okay, you have probably heard about it and even noticed I refer to having a brain injury, but have really not had me admit it or explain it. Until now…

This is it! If you don’t know for sure ABI stands for Acquired Brain Injury. There are others like TBI – Traumatic Brain Injury and I think there should be another acronym of which would be DDK – Doctors Don’t Know! More of that in just a second.

I have avoided doing the whole “Once upon a time, into my blog like most other blog’s for several reasons.

  1. My story would start at the age of 34, when I found out about something I’d had for more than 34 years.
  2. Many people get grumpy about how I now “Bang on” about Brain Injury, because I now know I have one! But they were always happy in the past when what I would “Bang on” about made them money. At least I have a Brain Injury to be Banging on” about.

But in reality I have a uniquely shitty ABI because DDK how it happens. There is no specific finding thrown at it to cure it!/Research it and the “cure” in my situation has left me looking like I’ve had a “stroke” without the funding and assistance.

But all the issues and negativity because people look at me like I did something to deserve the issue I now have.

I actually had a lifetime of some very subtle “things” that were easily dismissed until I was in a stressful work environment at 34 years of age where I was being bullied and when I was working with an older gentleman who had a son my age with MS (Multiple Sclerosis)..

He noticed I had a weakness in my left arm, I thought I was camouflaging and started to pester me to see my Doctor.

And so, I finally did go see my Doctor. The last thing on my list was that I had a slight weakness in my left arn.

His instant response was I needed a CAT Scan.

I got one and had my first experience of “Contrast” or Iodine” but again, more of that later. You will love that story!

So a few weeks later after my scan I returned to my GP’s office.

That next visit has become infamous. One of those days when you don’t remember anything else that happens except that one moment of clarity you will never forget.

My GP held my scan up to the window as though like a lightbox and pointed to one side of the scan stating “See this side?” “This is normal……” Oh how we love that term.

I could see the other side looked different, darker.

I kind of gave a “Yeah, what’s going on with…..?”

And he pointed at the area of the other side and described a cluster of arteries and called it an Arterio Venus Malformation or an AVM for short.

I confess to say, I had no idea what it meant or how it got there. But to say I’d had a pretty shitty week, having lost my job, I didn’t know what it meant or how it might affect my ability to get another job.

I also confess to say, I cried. Dr Chris made a move to comfort me (Lord love him) and I explained the shitty week I’d had.

Well this is not over, but I felt inspired and now it’s 3am so I really think it’s time for sleep.

Meanwhile, feel free to Google AVM, I always tell people it’s the medical one not the IT related one.

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