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AVM Survivors Network

Well, #@$#$$^&$%$#&*%

#1

Ever had one of those moments where something gets explained to you and suddenly you realize that even though you didn’t see it before, now it makes sense and you’re thinking, crap now I’ve got another hill to climb?

I had an appt this afternoon with the audiologist who handles warranty work on my hearing aids. One of them had a lose wire and so it wasn’t working. In addition, she wanted to run the typical hearing tests to make sure they were adjusted right.

It turns out that with the hearing aids in, hearing is exactly “normal.” This is a good thing. So…Why am I having a hard time following conversations in a group? Why (fill in a number of other hearing challenges)?

It turns out that that the hearing challenges that I thought were hearing issues might actually be cognitive processing issues.

Well ##%^#!

That was not what I wanted to hear. It’s not someting a simple adjustment to hearing aids will fix. Instead, it adds to the list of things that I’ve got to deal with.

So, has anyone had what looks like “auditory processing disorder” because of your AVM or the treatment of your AVM? If so, what can you tell me?

TJ

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#2

I’m sorry, TJ, that this is happening to you. As one with a hearing impairment myself, I know only too well the challenges of life in the auditory twilight zone.

One good thing, though: none of that matters here at Bens Friends! I’m afraid I cant respond to your question about auditory processing problems related to AVM but I can imagine that it’s a worrying problem.

Stay strong

Seenie

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#3

Hey TJ,
I have an auditory processing disorder too. The wife swears it’s selective hearing issue ie I just select not to hear her lol. After my first operation I had an awful sound of fluid rushing whilst walking. The hospital audiologist performed a procedure which was rather uncomfortable and although it did not fix the problem, it did reduce it somewhat.
I do not have hearing aides but when they placed the 2nd shunt my hearing took a shape 90 degree turn, surgeon says “It wasn’t me” but I seem to miss things. Tests all come back normal (Me? normal? now that’s a joke) It seems it’s just another one of those things I have to get used too. I’m not good in groups, it’s as if I have information overload, which results in a killer headache. Audiologist says that’s a visual thing, ophthalmologist says its a hearing thing, neurologist says just stay away from group things. I can’t win and people wonder why I’m so disheartened by medicos.
Sorry, I’ll stop bitchin now.

Merl from the Moderator Support Team

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#4

yup… my wife swears it is selective hearing too

sigh… :slight_smile:

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#5

I defintely have “selective hearing” sometimes when I have a migraine. I hear the words but the have no meaning, kinda like background noise. Or, I won’t hear it at all or maybe I’m not remembering that I heard it.

I’ve had the conversation “… but I told you this-and-and-the-other-thing when we were doing this-and-that and you told me…” and I have no recollection, even when it sounds exactly that something I would have said in respone.

I’m not so sure it’s actual hearing as much as it’s nuerological processing because, as everyone else has mentioned, my hearing is fundamentally fine.

azurelle

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#6

For 40+ years, I was accused of “not applying myself” when it was dyscalculia. I’d like to find the teachers who ridiculed me in front of the class and ridicule them. I’m sure that wouldn’t make any difference, a dummy is a dummy, right?

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#7

No, wrong. When it’s dyscalculia it’s a condition, not a dummy
Though I’m sure it wouldn’t make a difference.
I have a similar ‘like’ to find the dr’s who labelled it all as hypochondria all those years ago and give them a dose of their own medicine, though as I say…
…“I’m sure it wouldn’t make a difference.”

Merl from the Moderator Support Team

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#8

As someone who still has difficulty telling time from the face of a clock, can’t do math beyond basic arithmetic, have to show up early at appointments because I don’t want to be late.
I didn’t know about my AVM until I was 27. I didn’t know what the symptoms I was experiencing meant. The only thing my symptoms meant 50 years ago was “dummy”

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#9

I also have problems with many people talking. The voices make so many sounds that I can’t follow them. In large meetings, I get confused and can’t follow what’s going on. I’m ok with one on one, but in groups, I can’t follow the conversations.

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#10

Hey tdz,
Labels can have a life long impact. Some people may see them as harmless but I can assure you after working with people with disabilities for many years those, what are perceived as, ‘motivational’ labels can be soul destroying. They attack our self confidence and even 40-50yrs on they are a constant reminder.

When I was working I would try and find other methods/other ways to do the task. For example you state about telling time. So we would try a digital watch (No clock face) or a talking watch where my client could push a button and the device would read the time for them. A part of my job was teaching people how to cook, now if a client couldn’t read giving them a written recipe was a waste of time for everybody and rather demeaning.

So I’d take the recipe the client had chosen, take it home and cook it myself, taking photos of each ingredient and each step, then print up a flow chart of the photos with the most basic of instructions. We would then run through the processes making the recipe and refine the flow chart to meet that specific clients needs. If the recipe says 1/2 a cup of flour we had a pic of a cup with a 1/2 way line marked and a pic of the packet/bag of flour. If the client shopped at a specific store that stocked their own brand of flour then I’d be sure to take a photo on my phone of that brand to assist in identification for their specific flow chart. By allowing the clients to prepare their own meals it took some of that stigma of ‘dummy’ away. They had been told their whole lives “You can’t”, but they could if they had a little assistance. A big part of my role was boosting confidence. Breaking down those pre installed ideas of ‘dummy’.

Another example was catching public transport in a city with 100’s of buses and 1000’s of bus stops. If someone told them ‘you need to be at stop 50 at 10am’ many would just PANIC. If it was a regular route for them then we’d teach them how to find stop 50, not by the number but by land marks that they recognised. I knew where the post office was but they often had no idea, but they knew where the town clock (on top of the post office) was. My landmark was the P.O., their landmark was the clock. We made them a card with their specific bus number on it, so they weren’t looking for specifically a bus number, but the bus that matched their card. We had to work outside of the norm and I still use those skills today, for myself. I call it lateral thinking “How else can I do this?” some may think ‘Well that’s not normal’. Me and normal often don’t work, so I have to think laterally to get the task done.
Don’t be taking on the label of ‘Dummy’, think another way of doing things and take the label of ‘Genius’. To think outside of normal takes ‘Genius’.

Merl from the Moderator Support Team

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