ANA Discussion Forum
General Category => AN Issues => Topic started by: mrgarlic on November 01, 2008, 10:02:21 pm
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I am having my surgery for Trigeminal Neuroma in 19 days. I am getting odd questions. ,,,,,,,,,You have a brain tumor??? ! ! My gosh you don't even act like it. Wow!!! I would never know to look at you !! Your'e kidding right?? My brother had one, he died. How did the Dr know you had one?? I would be pettrified!! Wow, maybe that's what my wife has, tell me again where you hurt? ,,,,OK, fellow AN ers, Just how can we get together and find a way to look like we feel?? Maybe if I can look really scared, someone will come over and cut my lawn and clean my gutters :) :) :) .......Larry
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I get more of well it's benign, I would just leave it. I am at the point where I will just deal with it by myself or on this site. It is hard to understand myself, so probably more confusing to others. Maybe a good response for you would be " I am very lucky to have been diagnosed and to be scheduled for surgery before the tumor has it's way with me". Best of luck with your surgery.
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That's how I feel. A lot going on inside but not much outward. Much difficulty hearing and balance but not much visible to others. I don't want to keep telling even my wife about the internal sounds and difficulties I face because I feel like I am hypochondriac (I do tell her). It is all inside.
JD
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My wife used to hassle me about not hearing, and being deaf. Now that I have been diagnosed with the AN, she doesn't mind repeating herself so much :). I know what you mean about telling the wife about the noises. I don't much anymore. It's been pretty loud at times, but my hearing, though reduced, has been pretty stable.
For me, people at work have been very supportive. My boss sent an email last week asking me when I was going to need the time off, mentioning that there was some travel for people coming up to go to training and such. I sent a message back saying that this wasn't urgent, and to give me a 6 or so week window that would be best. He wrote back and basically said hold on here... you tell me when you are having your surgery, we'll work out the travel around that. Nice to have supportive people around you.
As far as people saying "it's benign, leave it alone", just show them a picture of your brain. I hid my affliction from my coworkers for a few weeks, then one day I showed someone the picture of Stephen King I took at the Red Sox/Rays game. Unfortunately, there was a picture of my brain right there next to it. The guy pointed to the white spot and said "That can't be good". Had to go public at that point :)
I wonder, how are people with brain tumors supposed to act? :)
Ernie
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I agree with ya Cheri, I tell people when such a topic arises....The look on their face is priceless....Just this past friday (halloween) I mentioned it to my ex sister in law and she goes "Really, you dont like you have one....You look normal"...Well of course I explained to her and then walked away chuckling to myself....I will not hid the fact that I have a tumor...I know people who dont have or had a AN dont understand. Sometimes I wonder if the ENT and surgeons understand how we fell and what we go thru...Right now it is affecting my work...HEaring is diminishing...Tinnitus getting louder and now is 24/7...This is the only place that understands and where we can vent if need be...I have decided to tell my ENT I want the booger out of my head. I want surgery in or around April when I get back from Florida...Booger has taken up enough of my brain thoughts...I WANT THE SQUATTER OUT...
JO :o
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Larry:
Because different people have different conceptions of what 'brain tumor' means, you'll get very different responses when you tell people you have one.
Some will assume that you actually have a malignant tumor in your brain, which is usually fatal and very debilitating when it occurs. An acoustic neuroma isn't technically a 'brain tumor', more like a skull-based tumor, but we use 'brain tumor' as a sort of shorthand because explaining exactly what an acoustic neuroma is would cause most folk's eyes to glaze over before we finished the explanation. I know, I've tried doing that - with unsatisfactory results. Lately, if the subject arises, I just say "yeah, I had a brain tumor. I'm fine, now". Its easier that way but it does risk getting the kind of slightly ignorant remarks you mentioned. This never happened to me but If I had said it's benign and was told to "leave it alone" I would respond by saying that would be impossible, because the tumor grows and makes big problems. I also would mention that, left unchecked, an acoustic neuroma can kill you. This is factual.
Like many fairly serious medical problems, our AN's don't carry a visible manifestation other than the imbalance factor, which sometimes makes us walk like a drunk. My wife got me to the doctor because of my imbalance problems that became glaringly obvious. My severe loss of appetite and noticeable yet unexplained fatigue were also a factor but, to the casual observer (not living with you day-by-day), none of these would have been obvious. Frankly, after my diagnosis I didn't want to look sick and, like many AN patients, just soldiered on with my AN issues, both before and after surgery/radiation. Fortunately, my post-op issues were few and minor. I consider myself blessed and tell people that, when asked how I made out "with that brain tumor thing?" Now, over two years later, my AN experience is a fairly distant memory and just about never comes up in casual conversation with friends. I look good, feel good and appreciate every day. :)
Jim
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I didn't tell anyone at work that I was having brain surgery. I didn't want anyone to think that my cognative skills would be affected by "BRAIN SURGERY" :-\ So....for the few people that I did tell what was wrong, I was honest, but just didn't go into details..."I had a benign tumor on the nerve that goes to my inner ear". Unless people were really curious, they just assumed that the surgery would be through my ear. I let them think that. If they REALLY wanted to know, then they could have looked it up on the internet.
Don't know if I did the right thing or not, but I only have myself to depend on, as I'm single so only one income and I didn't feel I could take a chance. Sad, huh?
Cathy
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"I had a benign tumor on the nerve that goes to my inner ear".
I think that is a perfectly reasonable way to put it. I too had a tendency to stay away from any suggestion that brain function might be affected. Then again, being a computer guy, I also typed up a Word document, with quotes from the radiologist's report, and pictures from the MRI, and put it on my bulletin board. Most people realized they would be in for some techno-babble if they asked about it, and were content to walk away thinking "Steve just has some weird growth in his ear." Which I did. :)
Steve
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Cheri~
I am also a glass 1/2 FULL girl and I agree with you 100% - I have done many of the same things! Keep it up girl!
K ;D
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Then again, being a computer guy, I also typed up a Word document, with quotes from the radiologist's report, and pictures from the MRI, and put it on my bulletin board
Ha ha....I'm in IT, too. Sounds like a perfectly logical thing to do! :)
Cathy
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From what I've heard neurosurgeon's will agree vestibular schwannomas are brain tumors even though they don't grow FROM or IN the brain tissues itself, they do grow from the nerves of the brain, and these nerves are a vital part making it a brain tumor. If it were considered a "nerve" tumor I think we would find information of it under that category. Skull-base tumors do grow outside the brain in the skull but still come from brain nerves making it a brain tumor--right?
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I'm nort really sure whether an AN is technically a brain tumor -- in fact the ENT who diagnosed me told me not to think of it as a brain tumor. Since then I've read a lot of litierature, inclluding articles from medical journals, that refer to ANs as brain tumors, so go figure. It's a good question and one I may ask my doc on Wednesday when I see him.
Since I have seen ANs referred to as brain tumors, I have told people I have a brain tumor for the very reason Jim has. When I tried to explain what was wrong in the beginning, other people thought it was like an inner ear infection and make light of it, which was upsetting or just ask too many questions that I couldn't answer then. Others eyes would just glaze over when I tried to explain what an AN was. Since the term "benign brain tumor" explained that it is a serious problem without having to go much further, it is the easiest, most simple explanation. When they asked why I didn't just leave it alone since it was benign, explaining that it would continue to grow and cause serious complications it was enough to explain why I was having surgery.
Wendy
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My surgeon told me it wasn't brain surgery when I called it that in a conversation. Then later he called it brain surgery himself,so go figure!
Cheryl R
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My neurosurgeon and neurotologist never called my AN surgery brain surgery. In fact, these words never dawned on me until I joined this forum and it was used repeatedly.
But my insurance company referred to my crainectomy, so I guess it's just terminology and what words you personally like to use.
I've always referred to my AN or my acoustic neuroma, and the first time my neurotologist referred to it as my "tumor" (long after my surgery) I was appalled :o I told him I'd rather call it my acoustic neuroma. The word tumor just totally freaked me out.
Jan
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I have all the same questions and looks from everyone. You look good and must be OK. I now carry a picture of my incision after my stitches were taken out and then they say Oh MY!!!! Are you OK!!!
A friend of mine had a growth on top of her head taken out two weeks ago, it was benigh but 3 days after surgery she had a stoke and now is not able to talk and is paralized on the left side. She is being placed in a rehad this week. I feel so fortunate that I can talk, walk (even though I'm off balance) etc. These are the times that we can say, I'm lucky!!! We may have some side effects to deal with, but I'm still very lucky.....
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Greetngs to all and to CWOOD,,,,,,,Amen Amen and Amen. I didn't expect this much response. Some post's were all about what to call "our condidion" And I for one try to go for rhe easiest to describe. A tumor is a tumor, weather it is in or on my brain. Why get legalistic?
I am a guy, so gory is OK. My scar's are my measure of my life. Maybe I should have said "How should I look?" It is our attitude that is throwing people for a loop. I for one am very positive about this surgery. I may lose good use of my eye, I may have a numb face, BUT guess what ???? I am going to live and I will make the most of what I end up with. Are we expected to go around looking sad and teary eyed? I refuse to do that. Jesus lives in heart and he ain't sad. Larry
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Larry,
If you really want to freak people out, maybe you can hit up the Halloween stores (everything's half price now) and get some gory costume pieces, some fake blood - maybe a brain in a jar....then maybe they'd believe you when you said you had a brain tumor! ;D I didn't know there was a certain way we were supposed to look - someone should have told us!
And Wendy, technically, AN's are not brain tumors because they do not arise from brain cells, they arise from the Schwann cells that "insulate" the Cranial neves, and since these are found in the brain, that's where the brain tumor description came from. It's probably a lot easier to tell people you have a benign brain tumor than telling them you have a benign Schwann cell tumor. I'm guessing you might have to go into a little more detail on that. And since they sawed my skull open and dug around in my brain, I have no problem referring to it as a brain tumor! ;)
Lori
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Wait until after your surgery and people ask how you are and you say you're doing just ok and they tell you you look good. My face was half frozen, I don't know who they were looking at it, but I wouldn't say I looked good, different maybe, not good.
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Hi Lori,
Yes, I did know that ANs arise from the schwann cells, and actually I believe the technically correct name is vestibular schwannoma :). I have no problem calling my AN a benign brain tumor for the very reasons as you and everyone else. Also after I wrote my last post, just out of curiosity I looked at the statements I got from Aetna regarding my surgery and the doctors' percertification. My neurosurgeon called my AN a brain tumor and my neurotologist called it a brain lesion (same thing really) so if they call them brain tumors apparently, although it is technically incorrect, it is commonly referred to as a brain tumor, even by most of the experts.
As for how I look, yes, I look fine and for the most part, I am -- I am very thankful that I don't have facial paralysis and I feel very fortunate. Because of that people assume everything will be " normal" again for me. My balance issues are improving but are still here -- but I am deaf in one ear now, like many of you. BAHA will help that but not cure it. Sometimes, it annoys me that other people don't see that. Being SSD is not nothing -- I usually have a very positive outlook, but this has changed my life, in some ways for the better, but being SSD is not something I would choose. So yes, I look fine but I have a new "normal" to adjust to.
Wendy
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Yep, it's bad juju to have a brain tumor (or whatever you want to call the invader). I can't say the last 20 years have been fun. How could you, with the inconvenient aftermath? But, I know that I'm alive, and I'm living a life that I wouldn't trade for anything. You can, too. :)
Live it.
Verl
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My ENT first told me about my AN by saying 'do you mind if i use the term brain tumour?' !! this came as a bit of a shock after being reassured that it was highly unlikely that my MRI would show anything abnormal.
Brain tumour is the easiest term to use by far. I've found that the people i've told about my AN tend to say 'why are you still working? you should be resting.' I wish!! I think i'm trying to act as normal and not let the AN interfere in my life too much. Taking time off would only let me dwell on it and get me down i think. I'm working on getting the 'half full' attitude, i think i have it most of the time but sometimes its easy to focus on the negative.
Hannie
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Hannie
I hear what you mean when you say if not kept busy one tends to dwell on the fact that a tumor resides in our brain...I know that when I'm not working and my mind is idle, it tends to wonder over to Booger. Day in and day out. And because of this, I have decided to have it removed. I'm hoping sometime in the spring. After my vacations...
JO ;D
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Hey Jo
Looks like we have exactly the same plan then. I'm hoping to have my tumour removed in the spring too. I've got to wait for the NHS thought so who knows when i'll actually wave goodbye to the booger. Hopefully it'll give me some peace of mind when i do!
I'm inspired by how positive everyone here is despite experiencing considerable pain and changes to your life.
Anne-Marie I hope the headaches get better with time
Hannie
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These are interesting reactions. Before my son had his surgery we only told a few people because I didn't want any pity. It affected my ability to stay positive. But, ,Eric had a very large one on his brainstem and it was serious. We were sober and told people it was serious, it was because of the size.
After surgery Eric doesn't like telling people unless he has to. He will tell people if they need to know about his hearing or because he has those coughing fits, which are getting better. When he had no voice we had to tell everyone and it wasn't pleasant for him.
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i heard an eye surgeon say at out local ANA meeting
"AN's are one of those you dont need to do it surgeries. You can always wait another year or two"
whew........ the truth is i got the data. there was something in my head, hearing was gone, age wasnt getting younger, insurance was helpful,
when i explained what was going on most were supportive and helpful. those that werent ??? well so be it.....
i told my coworkers because i would be off last week of school and a replacement teacher was needed.....
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WhenI went to the ENT doctor after I was diagnosed with AN he didn't say anything about brain surgery. Wo I was very calm and a little scared about it. Then I had to go see the neaurosurgen that worked with that doctor and he said he was not going to surgar coat it this is major brain surgery. That did me in after that. The surgery went better then I expected except I have had 4 surgeries after for CSF leaks because of my porous anatomy up there.
Karen