this sucks

August 23, 2010

Hiya ,

some of that sounds familiar. Good news is that you already have the best thing

to get you through the next bit , a sense of humour.

I won't bore you with my history but I had alot of trouble adjusting.

Some of the things that I found helped me were, this support group, it helps so

much knowing you're not alone with this.

Next useful thing was a Deaf Awareness course run by a local Deaf Centre, that's

where I learned that yes I was overcompensating and working really hard to keep

up with people, which meant I was tiring myself out and getting irritable

especially after being around people and interacting with them.

It also covered the fact that you have gone through a trauma and sometimes the

body can react in shock, which can manifest itself in odd ways, easier for women

as at least we're allowed to cry in public.

Another aspect was memory problems, it is very common for there to be

accompanying memory issues, you may or may not notice them or attribute them to

hearing loss. I won't go into the why's of that one but it made for some

interesting research.

AHA! yep we need quiet times, it varies for all of us as does the condition and

the way we cope with things but letting your family know you need a nap or just

some space where there is no background you have no control over.

If like me your family is a tad stubborn in failing to make adjustments at first

then please just persevere, the best way to get them to understand what you're

going through is to ask them to wear ear plugs and headphones over the top for a

day (those old fashioned huge ones from the 70's are best for this.) This may

sound daft but it works at showing them how frustrating not being able to

understand what the hells going on actually is.

I also found joining a lip reading class and later a sign language class

usefull. I was often the youngest person in the lip reading class but it still

helped being around others who experience similar difficulties. I was so

relieved to find out I wasn't the only lady who had to deal with guys who get

entirely the wrong idea about you because you are reading their lips.( I suspect

the fella's get a similar problem, just deal with it differently)

As for that damn fire alarm in your head well it will get quieter eventually, (

hah they've just announced there's a fire drill here in a moment!) bad news is

that one gets worse when you get stressed. Yes it is loud enough to drown out

speech, and there's different ones, personally I dislike the odd tone one which

seems to make me trance out for a few minutes. There's various gadgets and

gismos you can get via the Tinnitus sites or you can work out what works for

you.

The solutions I came up with to deal with communication problems varied, and

again you just have to try and see what works for you best. At the time I went

through this I was a busy mum of teenagers, so I painted every flat door in the

house with blackboard paint. It worked for me in many ways, memo's, reminders,

to do lists, with each door being visible easily. It also helped me deal with my

morning rages, since I was usually the one up first having to deal with everyone

else's problems before I was fully awake, I'd often have a rant in chalk then

rephrase things 10 minutes later when I calmed down.

Oh and it's ok to write yourself lists, back then I used a diary, nowadays I use

my cell phone to keep track of stuff.

As for the hearing aid well I only ever use mine if I really have to, it tends

to give me a low grade earache for hours after using it and I've been warned

that it could kick off another infection. I've concluded taking it out is the

audio equivalent of kicking your shoes off after a long hot day.

It's ok to feel what you're feeling, and there's lots of hugs sent your way from

all of us.

June

>

> This all happened so fast. 3 weeks ago I was a normal 42 year old guy who

went to the doc over a sinus infection. Now, I am recovering from the removal

of a golf ball sized cholesteatoma.

>

> I read quite a bit prior to the operation on the site. I must say I have

experienced some serious pain in my life before. Ruptured tendons, broken

bones, some bad burns, herniated disks and even had got my thumb chopped off and

sewed back on again. Well, this pain tops them all. I just cant figure it out.

Most folks I hear comments from suggest a little Tylenol and you will never no

anything happened. Maybe I am all screwed up but man am I in pain.

>

> It is very frustrating but it sure sounds like the cholesteatoma experience

has only just begun. from what I read from others posts.

>

> I have severe to profound hearing loss in my left ear. I have always got by

on my good right ear. I thought about getting a hearing aid one day but was

always putting it off due to the cost and the fact that my right ear was pretty

darn good. Well, one day about three weeks ago I went to my primary physician.

I thought I had a sinus infection or even some allergies. My ears were a bit

plugged up and I thought that a hay-fever shot would fix me right up. When the

doc told me he wanted a ct scan of my head I knew something was up. I really

new something was up when he got me the ct appointment 10 minutes later in the

same day and then had me referred to neuro surgeon the next morning. Normally

it would take me a month to get visited by a specialist. Ha. Anyhow, the day

the neuro saw me he wanted to operate on the right ear the next day. I told him

to hold his horses and that this was going a little to fast for me. He told me

he saw a 5cm mass on my ct scan affecting my good right ear and that if i was

not having side effects, i would be soon. In fact, he wondered just how I could

hear anything at all out of my right ear.

>

> Well we scheduled surgery about 10 days out. In that time my face began to

go numb on the right side and I started getting migraines from hell. The worst

part is that within a couple of days I lost all hearing in my " good " right ear.

So hear I sat with profound hearing loss in one in and near profound in the

other. I have a new found respect for the deaf. Hearing loss is tough to deal

with.

>

> The doctor told me that it took 6 hrs. to get it all out. At least all that

he could see. He is going back in my ear at 6 months. Sounds pretty standard.

He says I will most likely loose a good portion of my hearing because an

incredible amount of damage had been done but he just can't say until he starts

to rebuild.

>

> I know this is all pretty common. What I didn't expect was the amount of pain

I am experiencing after surgery. The right side of my head is swollen up. It

feels like someone has a pencil shoved into my ear to about mid brain and has to

poke it around for kicks every 20 minutes or so just to get my mind of the non

stop industrial style ringing in my ears. I am also very nauseated pretty much

24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like

it was forged at the Alcoa aluminum factory on the swing shift. I am scared to

keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl

of soup.) My smile is crooked now too. It does make me look cool with a cigar

in my mouth though, in sort of a gangster kind of way. Between the pain scowl,

nasty taste in my mouth and my permanent crooked smile I could pass for a

Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad

as it is it is not my worst complaint.

>

> Here is my worst complaint. My family is supportive but they just don't

understand. You see, my frustration level and my wife and kids is escalating

like never before. Simply because I cant understand what they are saying most

the time now. It gets very old to ask folks to please repeat. In fact, it gets

down right embarrassing after awhile. By the same token, they are literally

leaving me out of conversations, decisions and just about anything verbal

because of their frustration in having to repeat things over and over again to

me. It is to the point that I am avoiding my whole family due to the

communication issues and the frustration level. They are doing the same thing.

It is very hard on a marriage. It is depressing. I find myself pretending I am

asleep to avoid uncomfortable situations. I see my little girl entering then

leaving a room upon finding I am sitting in the room. When they do talk to me,

it seems like they have begun having just a little " attitude " and shrinking

patients with my hearing. When I misunderstand them and ask what they said I

get " never mind " more often than not now days.

>

> I have a hearing aid coming in a couple of weeks. I am sure it will help but

in some ways, the damage has been done. Don't get me wrong, it is not enough of

a problem to cause divorce or anything (yet) but I sure see that my spouse

treats me different than she used to. I hurts a bit. I see my kids doing it

too. It hurts from them even more. I am sure that I am overcompensating for

this defect as well. I have found myself trying to " impose " my will or

purposely trying to shake things up to get their attention for no other reason

than I feel so left out anymore.

>

> I am not posting this for sympathy or tons of advice but rather so that

someone else in this position or with a family member in this position might

benefit from some insight from a person who has gone pretty much deaf in a

month.

>

> It is just odd. One month ago, I never had thoughts one way or another

regarding communication. I rather thought it was good in my house. Now, the

whole communication thing is a daily struggle that I dread horribly.

>

August 26, 2010

Hi ,

I'll give you a little backround for me, I just found this forum and it's

surprising how our stories sorta of relate but Im not throught the woods yet. Im

basically looking for some feedback from people too... So I can stop the being

depressed and realize other people have went thru this too.

Im 22, I've had severe headaches now for about 2 years and every single doctor

Ive went to either says take some tylenol or that maybe i have migraines. The

migraine medicines never work and tylenol does nothing. I probably went to 6

doctors that all looked at me like I was some girl trying to get some drugs.

I finally went to a doctor that ordered an MRI- showed nothing... then to a

different doc that ordered a CT scan and finally found it. Believe it or not the

hearing in my left ear is not good at all but the choloesteatoma is in my RIGHT

ear... The one that I have PERFECT hearing in... So basically Im seeing the best

doctor at s Hopkins so that makes me feel better but the are doing a

complete WALL DOWN mastiodectomy where I will apparently be having a gaping hole

in my head... And Im only 22. Bc of the size and placement it is useless to do

the other one that doesnt leave you looking strange.. and i will probably lose

most of my hearing..

So on top of that... a week before I was scheduled for surgery.. I found out Im

pregnant... and believe it or not my fiance was told he could never have kids

since he had cancer as a child and the radiation eliminated that possibility. so

now I have to wait til the baby is born and then do the surgery 2 weeks after..

For a while all I did was listen out the window at the birds and things because

I am just so scared of lossing my hearing. I play violin and love music... and I

know the family issues would be such a problem with me too!!!

> >

> > This all happened so fast. 3 weeks ago I was a normal 42 year old guy who