ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Lou on April 17, 2012, 12:12:05 pm
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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.....
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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
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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
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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,
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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.
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Yes we do. I wonder if anyone has a good response, because it seems as though I dont!
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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
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Lou, as a side note, how is the British health system? Is it a government run provider?
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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
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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 ;D
Lovenhugs,
Suu xxoo
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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 ;D
Lovenhugs,
Suu xxoo
I wish I could say and write exactly like you, you explain it so perfectly....Keep it coming.
Best Wishes,
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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,
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I most definitely second that pity party count me in...
Best Wishes,
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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
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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,
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Well said Cheryl!!! I like the cranial nerve approach, as it does target the area so well!
Glad that we all have each other for comfort and support! You all have really given me courage, and a positive attitude is helpful, but most of all Faith in
God!!! "I can do all things through Christ who strenthens me".
Jackie
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Your words of support and wisdom have helped me more than you could imagine, well actually you do know! That is why I am so thankful to you all . The thing that makes me laugh is that we just get on with things most days, so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou
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Compassion, the most important lesson this journey has taught.
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Lou, are you NF2?
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... ... ... so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou
Well said, Lou. xxoo
PJB - You do write exactly like me ;D ;D ;D
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Hi James, this is going to sound really thick, but in answer to your question 'I don't know' I can tell you I have 2 facial nerve neuroma's - no one has ever said anything about NF2. I have never actually seen that term until I found you all. So as far as I can guess............not usually a good thing.......would be a very tentative yes...........
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Thanks Suu
I have to say, I quite often read your feedback comments, as you are so insightful.
as a side note. Crazy as it is, I have actually stopped using facebook and now only log on to this website if I feel the need to vent.. At least you have supportive -helpful feedback.
Love you alllllllllllllllllllllllllll
Lou
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... ... ... so when people do make uninformed comments, it really knocks you sideways. Thank you again. I think there is another common thread with AN s, compassion
Lou
Well said, Lou. xxoo
PJB - You do write exactly like me ;D ;D ;D
Thank you but far from writing like you and you should see what I write before I proofread it 3 times...haha.... :o
Best Wishes,
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NF2 is having 2 ANs. Cheryl R is NF2 and she knows this topic and I hope she will post here again to discuss this with you. It is very rare. If you were my sister, I would advise you to discuss this with your doctor and get a definite diagnosis. Your post says you have 2 facial neuromas, and they are different than ANs, but I believe the symptoms are very similar, but I don't know if having 2 facial neuromas is NF2. It is very important for you to know what type of tumors you have...talk to the doctor. Cheryl R had a facial neuroma, and she is a real pro. ANs are rare, but NF2 is super rare.
James
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Thanks James, yes I have two facial nerve neuromas, reason I came to you lovely people is that they I guess are rare as well and have no support group. Even if they did, I would stay here.. I am due for a check up soon and will ask. Thanks for your guidance I will seek out the info and let you know
Lou.
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Hi Lou,
I think you hit a nerve with your post - no pun intended, you're getting a lot of replies. I know I have posted this before, but we share here. I had brain surgery at the end of 2010 to remove my AN. My two very best friends who I had a relationship with for 20 years didn't even bother to see how I was doing, and oh I was really sick for quite a few months. I was devastated by their callous behavior and I rarely socialize with them today. You will find, that people either do not understand or cannot perceive what AN suffers go through.
Having said that, I have had the unfortunate experience of knowing two people who died from brain cancer, and a very close business associate has a 15 year old daughter who is dying from brain cancer right now. These people put on an incredible valiant effort to live, with surgery and chemo. It put things in perspective for us all.
Hang in there, you will get thicker skin as time goes on. I hope and pray that your family member is fine.
God Bless.
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Hi Chance, yes I think you may be right..
however thank you for sharing your story. It does put things in perspective.
Many thanks
Lou
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Lou, having the facial neuroma on both sides means in my opinion that you have NF2. There was a teenager on here some time ago who had NF2 and I know he found a place in the Uk which specializes in it. I of course can not remember his name or the dr. Maybe if you googled it might be able to find out where. The treatment for whatever kind of neuroma is done so that hearing preservation is kept on at least one side. Plus trying to preserve the facial nerve is important too. The tumor location can play a role in also on whichever nerve the tumor is located. Normally I would hqaver more time top check this out but we are leaving on a weeks vacation tomorrow and I have more to do today than usual. You should have some time to look into this but treatment when they are smaller might be better in the long run. This is something to keep on your dr about. You might be ok to wait and watch on one but maybe treatment on the other might be better sooner than later. I wishh you well. Cheryl R
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Thanks Cheryl, hope you have a great vacation. Talk to you when you get back.
Louxx
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Lou, while we wait for Cheryl's return, I suggest you read the NF2 forum and learn what it is all about. It is far more than "an ear thing." You might not be NF2, but I would sure want to talk to my doctor about it.
James
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Hiya Lou
Just a quick post to see how you're coping now?
Hugs,
Suu xxoo
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Hi Suu, thank you for asking. Yes coping much better thank you. Emergency flight to Pennsylvania booked for Thursday, Ears of course not happy, but will deal with that, first MRI check up cancelled, due to emergency trip. LOL, but am okay, will post to you all soon
Mandy x
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ignorance is bliss ain't it!
My reply to anyone that tries to diminish AN's to "just an ear thing"......"then why'd they crack my cranium to get it out"?
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ignorance is bliss ain't it!
My reply to anyone that tries to diminish AN's to "just an ear thing"......"then why'd they crack my cranium to get it out"?
Just keep saying we have 12 CRANIAL nerves and the 8th surgery was performed on....
Best Wishes,