AVM

All posts tagged AVM

Communication – Part 1

Published August 11, 2017 by helentastic67

Communication

Communications – Part 1

I’ve been told/accused really of being terrible at communicating. I think verbally and written I communicate my thoughts rather succinctly.

Some years ago, I was expressing this issue with a friend (let’s call him Fred). Now Fred to be clear has several TBI’s (Traumatic Brain Injury) from a car accident, but let’s not hold that against him.

TBI

He suggested I do a course he did in communications. Fred told me he had thought he was really good at communicating, but having participated in the course, he realised even he could improve.

I told him, I had no time to do a course, no cash and no ability to get to a College or University. He told me not to worry about it. It was FREE and she would come to me! What? Sounds too good to be true. Fred gave me her number and I rang her and it wasn’t an actual “Course” but I think it was more of a study. I had to explain, who I was how I had “gotten” my ABI (Acquired Brain Injury). Keeping in mind I was born with my AVM (Arterial Venus Malformation).

Listening skills

I thought I was having a decent conversation who actually seemed excited to be working with me. That sounded weird, but seriously.

Then she asked me when I’d had my CAR ACCIDENT?

Car accident

What?

I was not eligible for this communication course.

What’s worse than that is, this list of things.

  1. I don’t have a communication problem
  2. People have a hearing/listening problem.
  3. All of these “research” trials are based on people with TBI’s because they can dip into the TAC bucket of money.
  4. No one is doing any kinds of study on the different kinds of ABI/TBi’s and how they are different.

 

I think my communication is different to other types of ABI, particularly TBI (no offense to people with TBI’s). So many more things wrong with this…

failure_to_communicate_meme

 

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Cure

Published July 22, 2016 by helentastic67

Face mask 5

Cure!

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.

Stroke

Published May 30, 2016 by helentastic67

brain-stroke

Stroke!

Anyone can have a stroke. Young or old, unhealthy, healthy, smokers, non-smokers. You get the idea.

So we don’t say to young kids who have had a stroke, that they partied hard and took too many drugs do we?

I worked in pubs for all of my 20’s.

They were Alternative Clubs, by which I mean musically. I was a promoter/host/distributor.

Back in the day, before smart phones, when you went out to shops in retail shopping precincts to see posters of upcoming events/parties and get a nightclub ‘pass’.

I was the only promoter for the Alternative Club scene who had a retainer.

I spent several days and a week hitting the streets and sometimes up to 4-5 nights, all night out at clubs…

And I didn’t take drugs or drink, ok I barely drank. I drank Lemon, Lime and Bitters and occasionally at 4pm when my responsibilities were done, I had a Bailey’s on Ice.

I like to say, I was the most clean living person there with the exceptions of wearing leather and eating meat…

And despite writing this and explaining people still 1. Think I’m lying and 2. Presume I took drugs, even just once. NO, NO, I did not take drugs.

So you are probably wondering what happened?

Hopefully, by now you have Googled AVM. If not here is a link;

http://brainavm.oci.utoronto.ca/malformations/brain_avm_index.htm

Some AVM’s are small and operable. They are the ones that end up on those “real” medical shows. Example: Guy in his 20’s, studying hard, getting headaches, goes to hospital, they do a CAT scan.

Diagnose AVM, perform surgery.

Do touchy-feely tests in recovery.

Cured! Send home.

Helen’s commentary “um No!” Shaking head.

My AVM was large and deep (non-medical terms) mine had several arteries attached to it, feeding it and the nerve that works the left side of my body in the middle of the arteries.

They do say, if you can’t do something right, don’t bother.

So, yeah! Winning…

Christmas!!!

Published March 14, 2016 by helentastic67

Christmas lights 1

Christmas!!!

So our Christmas lights have several settings. My sister the lighting tech support recently described one of the settings as the Epileptic Fit Setting.

I’m really lucky I’ve NEVER had an Epileptic fit!

At least not a Clonic Tonic (Grand Mal) seizure.

I have things that give me a migraine, but no epilepsy. Not complaining……just saying.

I once had an appointment with a room full of Neuro type specialists and they couldn’t believe I’d never had a fit considering the size and location of my AVM.

I told the Doctors I had been to my share of dubs and dance parties back in the day and stared at enough strobe lights.

Consider this as a silver lining.

I’ve never had an epileptic fit!

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