arhhhhh, its just an ear thing!!!!

[Lou]

I know this subject has been posted before, but I am really ticked off today. Can anyone help me with the following. 'family member is in hospital and diagnosed with a brain tumor, Dr's are not sure what type yet but seem to be unconcerned.. family are flying in from all around' I try to be voice of reason and say 'dont panic, until we know what we are dealing with'  response well if you had a brain tumor, we would act same way, I  laugh and say , yes but I have two, response. dint be silly you have two little lumps on your ears..... I probably shouldn't be bothered but why do people dismiss facial/acoustic neuromas .....this has really upset me.....

[Jim Scott]

I know this subject has been posted before, but I am really ticked off today. Can anyone help me with the following. 'family member is in hospital and diagnosed with a brain tumor, Dr's are not sure what type yet but seem to be unconcerned.. family are flying in from all around' I try to be voice of reason and say 'dont panic, until we know what we are dealing with'  response well if you had a brain tumor, we would act same way, I  laugh and say , yes but I have two, response. dint be silly you have two little lumps on your ears..... I probably shouldn't be bothered but why do people dismiss facial/acoustic neuromas .....this has really upset me.....

I think some people sometimes treat ANs lightly because they are not well known or understood compared to other physical problems and when it is established they're benign - not malignant or otherwise fatal (unless untreated) - they consider the AN as not much more than an unwanted 'growth' that can be safely removed or irradiated - so, in their minds, how serious can it be?

That is simple ignorance based on a lack of the facts and while annoying, to be sure, can be rectified with information and the unpleasant revelation that these benign tumors are in a very problematic area and can force life-altering changes.  Those who are not interested in learning enough to arrive at an informed opinion about the seriousness of an acoustic neuroma should be ignored when they spout insensitive, uniformed nonsense. 

Jim

[Lou]

Thanks Jim
While I should be feeling concerned, which I am about this family member, I feel a bit jaded which is sad and I think I have now thrown myself a little pity party that no one seems to notice. How sad am I. But thank you your kind words of wisdom have helped a little
Lou

[pjb]

Here is the place to be upset and vent we all understand...I have dealt with that also people do not understand yes it is benign but it is still a brain tumor !!! They feel it is a hearing/facial problem and do consider that it still entails the brain !! Have to find a good comeback hoping someone here has one...

Best Wishes,

[Ned]

Jim is as usual spot on.  I totally understand you, and is it fine to have a pity party, have thrown a few myself.  The life of one with an AN is quite different than most others can understand.  Initially, I almost felt guilty talking about it and trying to explain.  Few people will really understand and you will adapt to the new normal.  Vent here, glad I have rediscovered this place.  Good luck, it gets better.

[Lou]

Yes we do. I wonder if anyone has a good response, because it seems as though I dont!

[Lou]

Thanks Ned
Thank god for this forum that's all I can say. I don't understand some people.. I don't  know how I would cope without it. I guess I am feeling a little sensitive as I am due for my fitst follow up MRI since diagnosis

[Ned]

Lou, as a side note, how is the British health system? Is it a government run provider?

[lrobie]

It just so happens that I after read your message earlier today, my boss comes into my office and we were talking about a couple of other employees who had previous health issues.  I was telling her that the one had non-hodgkins lymphoma and the other had a brain tumor, but I wasn't sure what kind.  This was years ago, before she started working there.  She said, with regard to the one with the brain tumor, "wow, that's too bad....at least you don't have a brain tumor."  I looked at her and said, "yes I do".  She was like, "oh, wow I didn't realize that they classified the tumor in your ear as a brain tumor because it's not in your brain."  Don't get me wrong, she is generally very supportive about this.  I'm sure that's what people think...that is has to be embedded in your brain in order to be classified as a "brain" tumor. 

Lisa

[Suu]

Hi all

I was told by a very wide-smiling neurosurgeon in front of his entourage that I had a brain tumour but I was very lucky that I had an AN as "If you were going to get a brain tumour this is the one to get."  I assumed by that statement that they'd yank it out and all would be well and that I'd get up and walk out of the hospital 4 days post-op and so did my family and then all would be hunky dory.
As you can read by the list of things in my signature, it wasn't the best type of anything to get.

I went through it but my family came along for the ride too and with each day, week, and month that I was in hospital, they wondered what the heck had gone wrong with taking out a simple lump.

If I was a family member or friend of someone who needed to get the point across about ANs I'd either send them the link to this forum or to another site where all of the pre and post-op things are written about what we have been through and what we are still dealing with.  It's not all doom and gloom but if I had my time over I would have done a LOT more research on this type of tumour so I could be an informed patient.  I could have then told my family of what may happen and hope that it didn't.

Show your friends and co-workers the signatures at the bottom of some of our posts to show them that it's 'not a lump in your ear'.

Ramble over 

Lovenhugs,
Suu xxoo

[pjb]

Hi all

I was told by a very wide-smiling neurosurgeon in front of his entourage that I had a brain tumour but I was very lucky that I had an AN as "If you were going to get a brain tumour this is the one to get."  I assumed by that statement that they'd yank it out and all would be well and that I'd get up and walk out of the hospital 4 days post-op and so did my family and then all would be hunky dory.
As you can read by the list of things in my signature, it wasn't the best type of anything to get.

I went through it but my family came along for the ride too and with each day, week, and month that I was in hospital, they wondered what the heck had gone wrong with taking out a simple lump.

If I was a family member or friend of someone who needed to get the point across about ANs I'd either send them the link to this forum or to another site where all of the pre and post-op things are written about what we have been through and what we are still dealing with.  It's not all doom and gloom but if I had my time over I would have done a LOT more research on this type of tumour so I could be an informed patient.  I could have then told my family of what may happen and hope that it didn't.

Show your friends and co-workers the signatures at the bottom of some of our posts to show them that it's 'not a lump in your ear'.

Ramble over 

Lovenhugs,
Suu xxoo

I wish I could say and write exactly like you, you explain it so perfectly....Keep it coming.

Best Wishes,

[pjb]

It just so happens that I after read your message earlier today, my boss comes into my office and we were talking about a couple of other employees who had previous health issues.  I was telling her that the one had non-hodgkins lymphoma and the other had a brain tumor, but I wasn't sure what kind.  This was years ago, before she started working there.  She said, with regard to the one with the brain tumor, "wow, that's too bad....at least you don't have a brain tumor."  I looked at her and said, "yes I do".  She was like, "oh, wow I didn't realize that they classified the tumor in your ear as a brain tumor because it's not in your brain."  Don't get me wrong, she is generally very supportive about this.  I'm sure that's what people think...that is has to be embedded in your brain in order to be classified as a "brain" tumor. 

Lisa

It is weird and sad but sometimes I feel guilty in having any feelings how lousy I feel because of these types of comments and I sit back and say wow it is only an ear thing and not cancerous so why am I complaining...But when I read posts like this and other sites I say wait a minute it was a brain tumor and I have problems from it ...do not get me wrong I am happy that is was not worse than it was but heh it is still a brain tumor !!!!

Best Wishes,

[pjb]

I most definitely second that pity party count me in...

Best Wishes,

[Cheryl R]

You can always say not an ear thing, a cranial nerve thing.      That might make a few people question more as most don't have a clue about cranial nerves.    Just remember too that most people have no idea how serious many health conditions are.         You know that ANs are a serious matter even if treatable and can affect us more than we wish it did.        We can look normal so people think one feels normal.        Just be good to yourself and know that many do understand!
                                                         Cheryl R

[pjb]

You can always say not an ear thing, a cranial nerve thing.      That might make a few people question more as most don't have a clue about cranial nerves.    Just remember too that most people have no idea how serious many health conditions are.         You know that ANs are a serious matter even if treatable and can affect us more than we wish it did.        We can look normal so people think one feels normal.        Just be good to yourself and know that many do understand!
                                                         Cheryl R

Thanks Cheryl it so helps having this groups for us to relate to ... I usually say the 8th cranial nerve now and funny just last night my son who I think is pretty intelligent said about the tinnitus he is thinking it is a ear issue and said even if the nerve is cut people still have tinnitus I said no it is a brain issue but could not explain it properly told him to google it. So that just proves how so many people do not truly understand and I was surprised with what he had thought as well..

Best Wishes,