ANA Discussion Forum
General Category => AN Issues => Topic started by: Nancy Drew on May 22, 2007, 12:34:31 pm
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When you tell someone about your AN do you call it a brain tumor? I have said brain tumor a couple of times, and it freaks me and other people out. I find myself now just calling it this tumor thing in my ear. It's not really a brain tumor is it? But, you hear it called that. Mostly I just don't talk about it because I don't have any serious symptoms. My AN is 4mm x 5mm, and I am in watch and wait mode. I have hearing problems at times, and I usually just tell people to speak up or I just put up with the fact that I'm going to miss out on the conversation. I think I am still running in the "denial mode". Probably won't seem real to me unless more serious symptoms show up. I just keep hoping it will be one of those that doesn't grow. I had my third MRI today so I think I am a bit more anxious than usual. Just interested though how you guys tell people about your AN. Thanks, Nancy
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Heh Nancy,
I was just at the dr last week. He stated that alot of people call them brain tumors. They are benign tumors in the inner ear canal.
What makes them so much of a PITA is that they are in bone. Brain tumors usually will grow in the brain and overtake it. AN are in bone, so there is not much room for them to grow. That is why they are so bad. I am also in a wait and watch mode. My AN is 2cm by 1.7 cm. I was really surprised that he said to wait. My next MRI is on 6/20/07. If my symptoms worsen or something drastically changes within that time or after, I need to contact him right away. I know what you are saying about hearing. My 10 year old has a very bad habit of trying to talk to me from the top of the stairs. I tell her to come down, I can't hear her. I try to be patient, because she is very scared right now. Her life is drastically changed right now. My husband was hurt 7 years ago, and he is just now trying to get back to work. So she is scared because I am not well, and her dad is going back to work. She wants to know who will be taking care of her this summer. I told her not to worry. She will come with me a couple of days a week to my work and her grammies for some of the time. Also, her best friends mom will be taking her at least one day a week. It will all work out. We will all survive. My blessings to you.
LOL
Laura
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When I was first diagnosed I called my girlfriends together and told them flat out that I had a benign tumor on my hearing nerve in my head, that I was having it surgically removed, and that I was not going to die from the tumor or the surgery. That was that! I also, told them they'd probably never have this type of tumor but that one sided hearing loss must be investigated in anyone they loved.
We have a saying...once in a while you run into somebody who deserves to know you have or had a brain tumor. It works! ;D
Technically it is a brain tumor. But I agree it is kinder and sometimes self expanatory to most people if you say "benign tumor on the hearing nerve" (acoustic neuroma)
Some patients of the surgical approach say they had 'brain surgery'.
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Nancy,
If I recall, the board had a lively discussion on this issue many months ago. I had always maintained that an AN is a cranial, not a Brain tumor since it sits in the head but never invades the Brain itself. After many folks offered numerous opinions, I think Dr. Spunberg closed the issue by explaining that in medical school Docs are taught that the cranial nerves are an extension of the Brain, so since the AN is attached to a cranial nerve, it is a brain tumor.
That being said, the consensus of the group was that you could give it any name you want with the favorite if I remember correctly being "booger" ;D
Mark
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Interesting thoughts all. I think it will work best for me to just say "Can you please speak up? I have problems hearing." It's true, and maybe that is all the average Joe in my life needs to know. With my friends and family I guess it is just best to give them more facts so they will be more understanding when I ask them to speak up. I don't think most people are aware of what an AN is. I've even had some doctors (like my orthopedist and dentist) say, "What is that?" So, it is that "thing in my ear" once I tell the friends and family what the AN is. I guess everyone has to do their own "thing" when it comes to dealing with their AN. At least we all know what it is (for the most part) in this forum. Best wishes to all.
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Outside of this forum, I don't advertise the fact that I had an acoustic neuroma tumor because my friends already know about it and it's no longer relevant to 'new' people I meet. My 'AN experience' will always be a part of my medical and personal history, for sure, but it isn't necessarily a part of my daily conversation. If the subject comes up, yes, I always refer to my AN as a 'brain tumor' as I believe that is an accurate term. To those who care, I explain the details, later. Few ask. Works for me. :)
Jim
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As a post-op patient with SSD, I often need to tell people I'm "deaf on one side" and could they please speak up/move to the other side/etc. I rarely offer an explanation to people who don't know by now. Most are too polite to ask how/why I'm partially deaf. For the few times I need to say more but don't want to offer details, I just say I had a benign tumor and it took my hearing on that side.
When discussing my surgery, I usually call it "skull surgery". That doesn't seem to have the same dire connotations that "brain surgery" has. Yes, they cut open my skull; but no, they didn't really mess around inside my brain. :D I think I still freak a little when thinking about "brain surgery" so I feel better if that's not how I label what I had done to me! LOL!
(If that made any sense at all...)
Katie
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I am very happy to say that I do NOT have a brain tumour as my insurance cover does not include treatment of brain tumours but does include all treatment options for acoustic neuromas!
Derek
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I say Brain Tumor because people don't understand Acoustic Neuroma. I do end up explaining relatively frequently because of my facial paralysis.
I also say it as a joke to get someone to do something or excuse something silly I have done. I think a little humor lightens the mood a bit.
I believe it is a brain tumor (medically speaking) and that is certainly affects my brain in many ways. My surgery was also brain surgery that required cutting out parts of my brain and pushing my brain around quite a bit. Yuck.
Having said that...in general I prefer not to talk about it because I am tired of this experience and I have to live with it all the time...so talking about it just makes it worse.
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That being said, the consensus of the group was that you could give it any name you want with the favorite if I remember correctly being "booger" ;D
Mark, you stole my term! I like the name of my AN! ;)
Regarding the "booger" in my head, as amymeri notes, when I try to explain that I have an AN, folks don't understand and I have to go into an elaborate explanation as to what it is. Sometimes it is easier to just note it as a brain tumor. I understand Dr. Spunberg's explanation (as Mark noted) as to what it is and thus, use that when explaning to others. Since it's inside the skull yet, it doesn't penetrate the brain itself, for me, I still deem it as a brain tumor as it can still affect critical structures affilliated with the brain (ie: if it grows to big and it's affect on the brainstem, how treatments can affect functions such as hearing/facial function, etc). As my "booger" has become a daily part of my life (being a moderator here on this site, brain tumor fundraising, organizing brunches and having had a sister that died of brain cancer, etc), I don't let it rule it. I have no issue sharing with others that I have a brain booger but, in my case, I do the best I can living with it and sharing with those around me.
I didn't have enough coffee yet.... sorry if that all sounded confusing.
Phyl
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Sorry to muddy the waters here
- its also known as a "lower skull base tumour"
and sometimes a " pain in the a--- ?"
best regards
tony
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As a "newbie" who doesn't have any other excuse, I refer to mine as an acoustic neuroma. If anyone asks, I usually offer: it is a type of benign brain tumor that originated in or on my auditory nerve. I have actually had a few sincere folks who really did want to know more and I tried to share with them as much as they could handle. I have tried to select a name for my AN since we are going to be so close for the forseeable future but nothing I have come up wth has seemed to work. I'm still working on it and am sure I will come up with something.
Richard
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It was first explained to me as an overproduction of cells surrounding the nerves that affect hearing and balance, and that's what I told my 78 year old mother. I try not to use the T word around her.
At work, it's a brain tumor. I find the FMLA and workplace accomodation folks are a bit more cooperative when I don't try to minimize it.
When I'm in the grocery store and I feel a little off balance...enough for people to notice and think I'm drunk....I say I've got an inner ear problem.
When I'm alone and freaking out, it's brain tumor. But when I'm in control, it's a bump in the road.
I thought about naming my AN too, but I don't want to give it any more power than it already has!
Betsy
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I've wondered the same thing, I'm just grateful it's gone. Still miss my hearing though
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I see it this way:
I had an enormous growth that not only deafened me in my left ear, but wrought other collateral damge within my cranium. The growth was so big it blocked the flow of CSF in my cranium, causing "hydrocephalus and compounding my equilibrium problems; it was so big that it impinged on the cerebellum, causing brain compression or what is referred to as "cerebellar retraction", causing stroke-like symptoms on my left-side. I had written about this in an earlier post entitled "Cerebellar Retraction and Handwriting Difficulties". I'm walking aroung with a shunt embedded in my cranium and a titanium mesh in the backside of my skull. Granted, the growth is located at the skull base but the skull had to be drilled through for it to be accessed. I had a brain tumor. It could have been worse no doubt but a brain tumor it was nonetheless.
Paul
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It all depend on to whom I'm speaking....to children I call it a bump in my ear......way in that they can't see. To adults I use "brain tumor" with an explaination. My 1 st tumor was not confined to the auditory canal, it was displacing the posterior lobe of my brain and within mm of the brain stem so I have difficulty calling it an ear thing. In a sense as they say "a rose by anyother name"
Kathleen
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I always say brain tumor because I love to see the look on people's faces. I have to find some humor in this nightmare...
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I personally like booger myself :). If I say brain tumor everyone like freaks because immediately it sounds like you have cancer. If I say acoustic neuroma then I have to be patient and explain (sometimes with diagrams) what this is. Most haven't quite caught the concept that they remove a nerve and that you can not hear. There is no renovating the inner ear canal, rebuilding the ear drum etc. So I usually just leave it alone and deal with the apparent issues like hearing and balance. People I work with have a real clue and people who don't know oh well. I know that is harass but there are times that life is better without having to explain it all one more time. I use various terms... depends on my mood and how much I really want to explain. And, Tony it was first presented to me as an acoustic schwannoma... So now I named my tumor booger henry vs booger pete and he is no more! Everyone please have a great evening and enjoy
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Actually neither... I tell them I have a non-cancerous tumor on a hearing nerve. I never talk about it actually, unless it's brought up, or if I engage about it which is hardly ever.
GM
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When people ask I say brain tumor (they only ask because my glasses have black tape over one side due to double vision). Then usually follow up saying it was Acoustic Neuroma, then follow up with I am deaf on one side and some facial paralysis but always end my conversatoin saying I am doing great (which I am even with the side effects)!
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Brain tumor - it does emphasize the seriousness of it all.
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To some degree we forget just how far medical science,
and operational success, has come
(the first surving OP was only 1912 (??))
Yet if you were to say to familly or co-workers
"a bullet the size of a golf ball passed clean through
my lower skull, taking out 2-3 nerves along the way..."
....But I am feeling much better now, thank you....?
I should like to see the look on their face.....
Best Regards
Tony
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just answer any queries with "vestibular schwanoma" that's as accurate as you can get i believe and will likely elicit a moment of silence it's got a classy ring to it neal
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I tell people I have a benign brain tumor which started from the hearing nerve. Most people never heard of acoustic neuroma. And it seems that as soon as people hear that it's benign, they don't feel that worried... But I also tell them if it's not treated, it could invade the brain stem and that would be bad!
Mary
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Interesting to hear what all of you had to say. I guess it just goes to show that we all have to do what we feel makes us comfortable. I guess since I am a newbie to this, I am just trying to get a grasp of what to think about the whole thing. This past weekend I was sitting on the patio at my local Starbucks feeling a bit sorry for myself. I am getting the results of my first annual MRI next week, and I am just a little worried about the whole situation even though my symptoms are minor. Someone I had met the day before stopped to talk, and she could tell I was troubled. I took a risk and told her some of the details. I think I initially said "brain tumor" out of frustration I suppose. Perhaps "brain tumor" gets more of a response when you need it. But, I went on to explain what an AN is and that it is a benign tumor. She was really nice and supportive. She assured me that there are some people who need some sensitivity training. You see, the day before a woman yelled at me and said, "What's the matter are you deaf?" when I asked her to repeat herself four times. So, I think from now on I'm just gonna say please speak up because I have a hard time hearing in my left ear. If there seems to be some sensitivity on that person's part, and I feel the need to share, then I'm gonna risk it and give more details to educate. If the word "brain tumor" feels right at the time, then that is what I'm gonna say, I guess. But, I will always give the fact that it is benign. No need to have someone wonder. There are so many others out there with medical issues we don't understand either, and I think since we can relate to their frustration, then maybe we should make a point to listen to them as well. I really appreciate that woman for listening to me. I was feeling sorry for myself that day, and I guess that is ok to feel that way sometimes as long as I don't get stuck in it. Do what you have to do all of you out there. The most important thing is for us to take care of ourselves physically and mentally. It's not fun having an AN. Nancy
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I think for me when you tell someone it was benign they just assume all is well in your world. For me it is not I am trying to find my way back to work and being able to do the things I did before and enjoyed. When I am frustrated and someone makes a snide comment about not hearing or my drunk walk I say I had a brain tumor. A lot of times I think I do it for the shock value and to make the person feel stupid for making fun of someone with a handicapping situation. I remember in the beginning trying to minimalize my diagnosis with my family and friends and they just did not understand what I was facing and why I didn't come out the same. Like a few others I had brain stem involvment. I know I will always have side affects from my tumor and will explain only when I have to and depending on how I'm feeling for the day will depend on it I say "brain tumor" or inner ear problems ;D
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Since my mom died a few years ago from heart surgery I learned from reading her death certificate her cause of death was associated with diabetes. Before my mom died and I heard someone had diabetes I didn't get that alarmed. However, after having experienced someone very close to me and someone who I loved dearly suffer from side effects and then die from heart surgery I realized suddenly I didn't have a clue about alot of stuff regarding health issues in life!
I was not very sensitive to folks with health problems prior to my AN. I've always and still believe in eating healthy balanced food (although potatoes, bread and dessert are still my favorites), exercising, getting out in the sun and getting plenty of rest. I have not been one to take medications so I've NOT been very understanding of folks when they do. However, the few months before my brain tumor was diagnosed I was suffering from horrible head aches (never had them before) and had to take pain pills. After my AN was removed I was fortunate that I only took a few pills for a few weeks after my surgery. Only recently have I been taking some aspirin in the evening due to some mild head aches. I've learned thru my ignorance that everyone is different, some folks are not as strong as others, some folks experience more pain than the norm, some folks recovery time is shorter or longer than mine and I need to be understanding of folks when they share with me their health issues in life and not be so judgemental. Since my surgery I pray alot more for my friends when they tell me they are not feeling well or have something wrong with them. I know prayers got me thru my recovery process!
So if someone asks me about my situation I believe I should share with them that I've had a brain tumor. I don't go into details unless someone asks and usually they don't. But if they do, they will be in a better position to learn a little more about the seriousness of a brain tumor and yes even if it is benign it is life altering and does change our lives quite a bit...
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Battyprincess, I feel like I owe you an apology because I think you are right about saying the tumor was/is benign, and then people think it's no big deal. Indeed it is a big deal especially for those who have had treatment and are suffering bothersome and serious consequences or those who have not had treatment and are experiencing frustrating symptoms also. I think since I am in watch and wait mode with only minor symptoms, I have also taken the attitude of, "Oh, it's benign. No big deal". When my ENT told me I had the AN, he told me it was benign and nothing to worry about especially since it is so small (4mm x 5mm). However these things do grow, and that is a big deal. Also from what I read here in this forum some people even with small ANs have bothersome problems and do come to the point where watch and wait is really not an option. So, really "benign" is not a word of relief when I see it from your point of view. Thanks so much for sharing what you did, and I wish you the best. Nancy