Being Brushed Off....?

[lrobie]

I'm sure it's not just me that has experienced this, but why is it that some people treat me as if having an Acoustic Neuroma is not a big deal?  For instance, while having a get together last night, my husband was saying something to his sister-in-law about me reading things on this forum for support.  She says, "oh, for her ear thing" and then goes on to another subject.  She's normally not like that.  I have to wonder if she doesn't realize that it's a brain tumor.  Maybe it's because it all started when I suddenly lost my hearing that they think it's maybe something not very far inside my ear.  I don't know.  It just frustrates me.  Sometimes I would like to shout out...I HAVE A BRAIN TUMOR!!!

Thanks for listening.

Lisa

[chloes mema]

Lisa, I know exactly how you feel.  I do think the average person just assumes it's something just inside the ear that has caused us to loose some of our hearing capability.  Also, I'm assuming that most people unless they are diagnosed with an acoustic neuroma have never heard of such a thing.  I know even talking to my internist and dentists about mine, they were both very casual about the fact that I was diagnosed with one.   
Also, I know that's what my daughter thought, that it was an ear thing, because she commented that she had told some one I had a tumor in my ear.  When I explained to her that it was a brain tumor not an ear tumor things were very different.
So I guess the bottom line, for me any way, is the person important enough to me to go into detail about it?
Take care.

Karen  

[mandy721]

When talking about Ken's acoustic neuroma, I always refer to it as a brain-stem tumor.  Bringing the brain into it generally gets people to think that this might be serious.  Even though it is non-malignant brain surgery is a big deal and very serious.  I think the casual reaction is either due to ignorance or callousness and I strive to educate people about the seriousness of the diagnosis.  One of my friend's who had microsurgery with complications  was being examined by a doctor appointed by Social Security and he remarked that she had "ear surgery".  As soon as she pointed out her scar, he was convinced that she had brain surgery.  I say shout out that you have a brain tumor cause you do.

[Susan A]

I've actually had the opposite happen. At the beginning of the school year my daughter made a big deal out of telling all her teachers that I have a brain tumor and telling them she might not be able to get her homework done because of it. Of course they thought I was dying! We had to explain to the teachers that a) I was not dying and b) I was on watch and wait and could potentially be there for many years. Oh and c) even if I DID have surgery this school year, she would not miss school and would have no reason not to keep up with her school work.

I've been up front about my hearing loss being as a result of a brain tumor, but I didn't want to make too big a deal out of it seeing as it hasn't affected me too badly so far - time enough for me to do that when it starts affecting me more or I do need surgery. I don't want to wear out people's sympathies before I really need their their support - but so far, I have minimal symptoms.

Explaining it to a colleague the other day tho' she clearly didn't quite get it at first and said, "Well why don't they just take it out now then?" "Well, that would be brain surgery and it's a big deal." I think for people who haven't heard of ANs before it IS difficult for them to understand.

[LisaM]

I think that sometimes it's easier for loved ones to think of it as "an ear thing". " An ear thing" doesn't sound so scary.  I know there have been times that all I wanted was a heavy dose of compassion with regards to the AN found in my head.  Unfortunately, most people just simply don't know what is involved.  That's why sites like this are so wonderful.  Sending you a heap of compassion!

C'est moi,
Lisa M

[lrobie]

Thanks for your responses.  I do have support from my work family and that helps a lot.  They realize that what I have could potentially be serious, but they also like to keep me upbeat about it.  For instance, on days when I just can't understand what they are saying, they pick up my letter opener and say they can take it out for me.     They also tell me they are going to go to my follow-up appointment with me.  Speaking of...it's tomorrow.

Lisa

[alabamajane]

Hang in there! For the most part, we have all experienced the feeling I imagine! As the AN is somewhat rare, although not so much so any longer seems,, the majority of your friends/family will not have ANY idea what you are dealing with, both physically and more so emotionally... I started announcing it as a brain tumor relating to my hearing nerve in the brain...... seemed to more accurately explain it for the "unknowing"..... ... it is a VERY big deal to us,, but as with most illnesses,, people don't really want to hear ALL about it if it does not affect them... plus, if it is not in their head,, it doesn't affect them the same way...

Even some in my family did not know the "seriousness" of it until they spent 11 hrs in waiting room with my husband! Then all of a sudden it was,, WOW ,, did not know this was so serious... DUH!!!! Told ya...

Even after surgery,, you can't explain much of what you have been through, ,before you see people "tuning you out" with all the details.. that is just human nature for most..
good luck,, don't fret too much over how "they" react to the news,, WE know what you are dealing with and it IS major!! WE are here for you anytime.....
Just saw your last post before posting this,, maybe they should go to your appt.. tomorrow.. probably would be an eye opener for them.. I know a girlfriend went with me to appt with a new Dr and she was really enlightened as to what it was and what was going to be done about it.. she had not realized the significance of it before that even though I TOLD her...

[james e]

Sometimes, you have to walk in someone else's shoes to understand. My wife just went through a major sinus infection, and one of her ears is totally blocked. She has taken steroids, used eat de-waxer (is that a word?), vinegar, alcohol, anything she can think of to unstop her ear. Her ear feels full and she cannot hear very well. Now she understands what I go through.  She has never had an ear problem before, and lo and behold, she now understands what it is like to be partially deaf. She appreciates my condition more than before.

Don't be too hard on her. She may want to lean on your shoulder one day. Keep the door open.

James

[Jim Scott]

Lisa ~

You've received some very astute responses and of course, many of us understand what you're dealing with when friends and/or relatives tend to dismiss your AN or act as if it is little more than a minor medical issue.  I chalk up that kind of reaction to either ignorance of what an acoustic neuroma really is and the effects it can have on ones quality of life and/or an aversion to dealing with the reality of this serious medical issue.  I know from other AN patient's experiences (as related on these forums) that this can get very frustrating.

I was fortunate to enjoy a relatively rapid recovery from AN surgery and follow-up radiation.  I had few lingering issues.  I also wanted to get back to normal as quickly as possible.  Although my wife has always been completely empathetic my adult son treated my AN experience as if I just had a minor illness.  Frankly, I don't think he liked seeing his dad as anything other than the healthy guy he'd always known.  Because I recovered rapidly, his jaunty 'you're fine' attitude was O.K.  I never wanted to burden friends so once I was back to (relative) normal, I never mentioned my AN, although being SSD made it necessary to explain to new friends why I was deaf in one ear I kept the explanation short and simple. 

I guess I just don't expect others to be all that interested or understanding so I never mention my AN experience unless there is a good reason to do so, which doesn't happen very often.  However, please know that, whatever the reason, you can always visit these forums for information, advice and understanding that only other AN patients can offer.  This is also a great place to vent your frustrations, when necessary...but I think you already know that. 

Best wishes for continued healing and reduced frustration. 

Jim

 

[lizzie1hoops]

Hi Lisa,

I'm glad you started this thread, it's been really interesting reading the responses.  Many people, myself pre-diagnosis included, don't understand the anatomy of the ear.  When I told people I was going to have a tumor removed from my inner ear, most (even a physician), asked if it was an outpatient procedure.  I guess we just all have to rely on each other for understanding and venting, as Jim pointed out.

Since surgery I've also realized that over the years I've been less sympathetic than I could have been to people struggling with illnesses of one type or another, particularly those that have had to have surgery.  I'm hoping to make up for this from here on out.

I'll be thinking of you tomorrow and I hope the appointment goes well.

Liz

[Crazycat]

Lisa,

  You're not alone. I could tell you some stories!!

[iluuvpups]

My brother continues to call what I have an "ear tumor".  I think this totally invalidates the serious nature of what I have.  I correct him and say "It's a brain tumor", but he continues to say it.  It's clear he thinks I'm making it into more than it is.  I'm not looking for sympathy, but an acknowledgement of what I actually have.

[Jim Scott]

My brother continues to call what I have an "ear tumor".  I think this totally invalidates the serious nature of what I have.  I correct him and say "It's a brain tumor", but he continues to say it.  It's clear he thinks I'm making it into more than it is.  I'm not looking for sympathy, but an acknowledgement of what I actually have.

Carol Ann ~

Without knowing your brother or your sibling dynamic, I'll speculate that your brother is attempting to diminish the seriousness of your AN to ease his concern for you.  If, in his mind, all you have is an 'ear tumor', that isn't so serious.  However, a 'brain tumor' definitely is.  This can be a form of self-protection for him so that he doesn't have to emotionally deal with the seriousness of your AN diagnosis.  Of course, he may be naive and not interested enough to try and understand the seriousness of your AN situation - or, he may just be insensitive.  I don't know - but avoiding the necessity of emotionally dealing with a family member's AN diagnosis and taking it as seriously as it demands is fairly rampant it seems .  Even my  (adult) son, with whom I have a close relationship, was reluctant to take my AN situation as seriously as he should have.   Fortunately, my surgery and radiation were both highly successful and my recovery fairly rapid so his laid-back attitude to my AN diagnosis and subsequent treatment was not a problem.  I hope your brother's attitude toward your AN diagnosis does not prove to be problematic as family support is very helpful to AN patients.   

Jim    

[cherrypiper]

They don't understand is all. Heck i didn't understand at first either. the best advice i got b4 surgery was from a dear friend who asked me,

Steve is this life threatening surgery?" in my case it wasn't.

She said , then remember to NOT make it seem like it is................

[chloes mema]

Exactly what one of my doctors said to me, "is it life threatening?"  That put things into perspective for me.

Karen