ANA Discussion Forum
Archive => Archives => Topic started by: Sefra22 on August 17, 2006, 11:36:22 am
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Everyone I know keeps telling me how well I am handling my diagnosis. In fact, I can't imagine any of them handiling it as well as I am. I try so hard to keep positive, but yesterday I had a total meltdown when I got home from work. :'( Does it mean I'm really not doing as well as I think I am?
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Nope, it means you are normal. Most of the time I could be very positive and optimistic both before and after surgery but there were definitely those times when I let it all explode. I definitely think that it is healthy to let it all out sometimes. Hang tough............
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Not at all....we all have our meltdown days.  If you're doing what I did, you're strong for everyone because you're trying to make them not so uncomfortable...everyone always acted so weird when they found out that it made me uncomfortable a lot.  Sometimes the burden just gets too much and you have to have a meltdown.  That's why we're here to talk to because we know how you feel.  That was the most comforting thing to me.  It just takes finding balance.  It's a heavy burden to be holding.
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You should not worry so - it is mentally exhausting waiting for issues like these
to be resolved - one on the list had cancer earlier in life - and thought it
mentally (at least) easier to deal with (??!!??)
Basically the medical profession moved very quickly - and she didnt really
have too long to dwell on it. With an A.N. time is not really so crucial
to the cure rate - so I/you/we, are often kept waiting.
It frays the nerves for sure
- so you can allow yourself a day off here and there
Best Regards
Tony
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Hi sefra,
Well, same An size, same surgery (retro-sigmoid) and almost same surgery date , only 1 year earlier. So, we have some things in common!!
You sound very normal. This is such 'big stuff' to handle. Actually, plenty of people were concerned at times because I handled it so well. I say, when you feel like it, scream if you want!!!!
Take care,
Pattibobatti
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Sefra,
 Please don't feel that way. Is it that you're feeling this way because others are making you feel like this? It can be maddening I know.
I've gone through a lot of grief in my life.  Keep the faith though, you'll get through it all!
Generally. people really don't care too much about another person's dilemma unless it's happening to or somehow concerning them.  Live is overwhelming regardless of whether things are going well or not. It seems that if we're not worrying or concerned about what is happening, then we're worried or concerned about what could or will happen.
 Even after having gone through what I went through, I've been dissed and laughed at. I'm tired. Tired of being human.
 Paul
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Sefra I say enjoy your meltdown! It's hard trying to stay strong and accept what we have been dealt with. Sometimes we need to have our pity party so we can pick ourselves back up and get through another day. No one understood what I was going through and still don't except for the people I've met on here. It's been my lifesaver! I had to stay strong throughout my diagnosis and surgery and didn't have time for any meltdowns before treatment...I find them to be very therapuetic now. Sometimes it's just too hard to try to keep the smile in place and say this too shall pass! I've enjoyed a day of timeout, no production except to get lost in a good book. I feel guilty for the indulgence but just needed the mental down time to regroup. Big Hugs to keep you strong! :-*
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On the outside you may look like your handling it well. On the inside you will be going through many different emotion, many times. From being scarred, to mad, to crying uncontrollably, to being so angry you just want to scream. So go right ahead and scream. Having your own pitty party every so often as you circle around through these emotions is not only part of the deal, it's a requirement if you want to get through this. A person can only be so strong, you need to have some outlet. As said a few posts ago on this thread, the people on this site are really the only people who can truly relate to how you are feeling and what you are and are going to go through. The effects of AN are not easily conveyed to non AN'ers
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You ARE definitely NORMAL!!!!!
Shortly after i was diagnosed, I quit telling my friends, because all I ended up doing was trying to comfort them. I got tired of putting on a strong and positive outlook to them.
I have had many a blow up/meltdown, both before and after my surgery.
Denise 8)
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I was genuinely scared before my surgery. Sometimes I'd sit and cry a bit thinking of what I would have to endure. Having the shunt surgery a month before gave me just a taste of things to come. But you know what? I emerged from the whole ordeal stronger than I was before. Stronger and more experienced. While this is a hard situation to endure - the hardest thing I ever went through! - it is not the end of the world. You'll get through. There's nothing wrong with feeling the emotions your having. It's only natural!
            Paul
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I agree with everyone else. You are perfectly normal. I only had a month between diagnosis and surgery so I didn't have a lot of time to think about it. When I told people I kept it light, like it was no big deal. I guess I didn't want them to worry about me. One person heard through the grapevine about my tumor and thought I was going to die. I had to call her and tell her it wasn't true. lol Since my surgery I've had people tell me how great it is that I have such a positive attitude. I just smile (well try to anyway) and think to myself what other choice do I have? I still have the occasionally meltdowns. I just do it in private or vent on here. This is a great place for that. It is so true that no one else really knows what it's like to have to deal with ANs.
Jean
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AAAAAAAAARRRR Sefra--
Even the heartiest of us Wenches and Skallywags has meltdowns! Even your fearless Capt Deb has meltdowns! But ain't no one know how ya feels 'cept us here cuz we all been through it!
So, take it easy
Listen to some Buffett
Take a bubble bath
paint yer toenails (red and greens my favorite)
Keep Postin' here
Captain Deb
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I feel better already. Your responses helped more than I can say. I don't know what I would do without the forum. I have learned more here than anywhere, including my from my doctors. I know it's hard for people who aren't going through it to understand. I didn't understand myself for the first few weeks.
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On the outside you may look like your handling it well. On the inside you will be going through many different emotion, many times. From being scarred, to mad, to crying uncontrollably, to being so angry you just want to scream. So go right ahead and scream. Having your own pitty party every so often as you circle around through these emotions is not only part of the deal, it's a requirement if you want to get through this. A person can only be so strong, you need to have some outlet. As said a few posts ago on this thread, the people on this site are really the only people who can truly relate to how you are feeling and what you are and are going to go through. The effects of AN are not easily conveyed to non AN'ers
You hit the nail on the head!
AAAAAAAAARRRR Sefra--
Even the heartiest of us Wenches and Skallywags has meltdowns! Even your fearless Capt Deb has meltdowns! But ain't no one know how ya feels 'cept us here cuz we all been through it!
So, take it easy
Listen to some Buffett
Take a bubble bath
paint yer toenails (red and greens my favorite)
Keep Postin' here
Captain Deb
Can I listen to Elton John instead? I'm a lifelong fan! As a matter of fact I painted my toenails today! Why? Because I was having a mammogram! I know it makes no sense to me either ;)
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Good, the less sense it makes, the better....that's why we call ourselves the wacky wonky-headed wenches (you'll understand wonky-headed more after surgery). Get as much humor and laughter in as you can, it's the best medicine. We'll keep ya company before and after your surgery, you will do just fine. I had to wait 4 months from diagnosis till surgery, and it seemed like forever. But now it seems like seconds now that I'm 6 weeks out. Hang in there, if us nuts can make it, so can you!!!!!!!!!!
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Sefra22:
An Acoustic Neuroma is admittedly scary - on many levels. So, when you inform friends, relatives and/or co-workers of your condition - "I have a brain tumor" is not a great ice-breaker, by the way - it's only natural for people to becomed alarmed (for you) and to expect you to be equally alarmed. That reaction is based on misperceptions. I used to explain that I had a 'sort-of' brain tumor - but I made sure to quickly add the two magic words: 'benign' and 'operable'. Still, most folks hear the words 'brain tumor' and immediately tune out anything else. They assume you are going to die and when you act positive, they cannot always understand it. This may be based on ignorance but it's also simple human nature and the fact that you are being positive in the face of a medical crisis is nothing to apologize for. Neither is having doubts and private 'melt-downs'. You, too, are just a human being and have the usual fears and concerns as anyone with an AN diagnosis. You have a right to be anxious, even scared, sometimes. I firmly believe that no one who has experienced an Acoustic Neuroma diagnosis can say they haven't been scared at some point. We are all vulnerable to our fears.
As a Christian, my faith gave me great comfort both before and after my surgery, and, as I could only do so much to 'fix' this, I put myself totally in God's hands. That gave me (and my wife) great peace and it was reflected in my genuine positive attitude and my sincere belief that this would 'be O.K.' I never actually felt that it wouldn't, but of course I had my fears, mostly about bad after-effects of AN surgery. When, pre-op, after a CAT-scan, the doctors thought they had detected a huge tumor on my liver, I was still calm and did not panic, even as my primary physician sounded alarm bells and offered my wife his deepest sympathy. My neurosurgeon cancelled my schedulled AN surgery, which he patently explained was simply 'a precaution'. A bioposy proved the tumor to be a hemangioma - a benign tumor made up of blood vessels. ...not cancerous or in any way threatening. No treatment was necessary and my AN surgery (retrosigmoid approach, same as you are having) was hastily re-scheduled.
While we were waiting for the results of the liver bioposy, I never wavered in my belief that if God wanted my life I was ready and willing to give it back to Him. It had been a good one. I'm 63, so, admittedly, this attitude wasn't as hard for me to adopt as it might be for someone 30 years younger and with dependent children. Still, although I was ready to accept the end of my mortal life on earth, I didn't really want it to end, if that were possible, Still, being determinedly optimistic, I always believed that the liver tumor would be benign, so, until I knew for sure, one way or the other (48 hours is a loooong time in these situations) I never got panicky or had a melt-down. Neither did my wife. Nervous? You bet. Depressed? Never.
My neurosurgeon's secretary (and most of our friends) marveled at our 'composure' in the face of the AN and (possible) cancer diagnosis. We just smiled and said that we were Christians and accepted God's will for my life, which was the truth. We were also doing everything we could (in the sense of being positive, having an excellent surgeon, etc) regarding my 'condition'. In the end, it all worked out. My surgery was relatively uneventful, I came through just fine and have had a speedy and near-complete recovery (at 10 weeks, post-op) with none of the weird and (naturally) depressing side effects some AN patients have, unfortunately, had to deal with. Now, a bit over 2 months post-op, when I see someone I haven't seen for awhile, they invariably tell me how good I look. It's kind of nice.
Can I offer you or anyone else the promise of a similar experience with their AN surgery? Of course not. Yes, of course having a strong, grounded religious faith iis very helpful in dealing with this kind of health crisis but having a positive attitude is also a choice. Shortly after my diagnosis (a month before my surgery) I looked back and realized how blessed I had been all these years. Good health, doing the work I wanted to do, a secure, loving marriage and a (now adult) son I could be proud of and who never gave us any 'trouble'. I live in a pleasant suburban neighborhood, in an attractive condo (worth twice what I paid for it), drive a new car (O.K., it's only a Honda), dress pretty well and enjoy a lot of life's small pleasures, such as eating out with my wife a few times per week. I was always determined to 'come back' from AN surgery as fully and as quickly as possible. I did. My neurosurgeon was pleasantly surprised - and almost baffled - as were my friends.
Now, a positive attitude can only do so much, of course, but it will never do you any harm, I can tell you that - with confidence - from my own experience. So, Sefra, keep yours and don't let it go. Yes, you will inevitably have some 'down' times and harbor some fears but face them, deal with them and don't apologize for having them. Crying and feeling scared are not anything to be ashamed of. That you choose to do so in private is a valid decision. No matter how much others sympathize and 'feel for you', no one really knows what you're going through (the folks on this board come as close as you can get). Realistically, few people in your circle probably really want to hear about your fears - and even if they did - what can they possibly say to you? Keep that brave facade, it helps everyone to cope better...especially you. Use this board to vent your fears and worries. That's why it's here.
Best of luck in your 'AN journey' - and please know that we will all be here for you as you need us.
Jim
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Hello Sefra22:
I had about 10 weeks between diagnosis and surgery to dwell on it. ÂÂ
About week 3 (after I met the surgeons and had it scheduled) the shock had worn off a bit and I had accepted my fate.  I cannot tell you how many times I heard from co-workers, friends, family:  "You sure are taking this well.  Jeez, I would be a wreck".  My response was always the same: "I will be fine.  The surgeons that are doing this surgery can do it in their sleep". ÂÂ
Well, about week 8 or 9 someone at work said it again, I lost it.  Major meltdown.  I started crying, YES I AM SCARED BUT IF I DON'T GET IT OUT I WILL DIE!!!  This woman retreated, said she was sorry etc....then I felt bad for making her feel uncomfortable.  Thats why we say we are fine even when we are not.  People cannot handle bad stuff very well.  Its human nature. ÂÂ
Then, frosting on the cake here, one of the young gals said to me on my last day before surgery: "don't worry, I was put under for my wisdom teeth, you will be fine".  I could not quit laughing.......then I felt bad again,  I know she meant well.
Cheers,  Kathy
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Wow…what can I add to this that hasn’t been already said; so many good points, so many strong emotions… For me it feels like a “facade� so many people see the “strong� way that I deal with it. They don’t see the days that it gets me down. I can’t relay how I feel on those bad days to my wife because she worries that I’m getting worse…and she cries. I can’t talk about it with my kids because “Dad’s are supposed to be invincible� right?  Plus…I don’t want to worry them. As for friends…they just don’t understand.  I feel even worse when I talk about it sometimes here on these sites because there are so many people dealing with major problems from their AN that I feel like I shouldn’t even bring it up. So I created an electronic journal that I type into (password protected)…there I can vent, yell, curse, and let it out so I can put my “strong� face back on for the rest of them.  So…you’re not alone…not at all. Just don’t do like me…write about it here.
Gary
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I guess you really don't know what you can handle until you have to. I, too believe what doesn't kill us makes us stronger. I think we are all brave.
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Sefra - I had my first meltdown 10 days after surgery in a Target store. It came out of no where, but was exactly what I needed. I had been the strong one for everyone from the moment I received my diagnosis.
Meltdowns are good for the soul and your minds way of cleansing!
hugs,
Cheryl
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I too hear that I am doing so good and my answer is usually What choice do I have? In most ways I am,but I do have my days. As a nurse though I do feel fortunate to be able to walk and talk and live a close to normal life. A fellow nurse who had a liver transplant was not so fortunate and died past a miserable period of time where he never did get any quality of life before he died. We were the same age.
You probably will find too once you have surgery that after a period of time when you look fine that everyone will assume are completely back to normal but the left over residual effects of the off balance feel and loss of some or all of hearing do not show up to others.
Hang in there. Here is where we are all completely understood! Even the doctors don't really understand what it feels like! Cheryl R.
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What people say to me is "well, you look just fabulous!" and I want to say, "well, thank you but I feel like crap most of the time, I can't hear anything, and my head feels like it's going to explode." But I don't, I just say, "gee, thanks." Oy!
Capt Deb
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I actually dont call it a Brain Tumor .. I call it a "Ear Tumor" and people dont get all freaked out !!!
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What people say to me is "well, you look just fabulous!" and I want to say, "well, thank you but I feel like crap most of the time, I can't hear anything, and my head feels like it's going to explode." But I don't, I just say, "gee, thanks." Oy!
Capt Deb
so when they ask, how are you, "fine thanks' is it because common, no one has the 2+ hours to hear how we really are!
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Joe, you're way too nice. I say brain tumor because if they can't handle it, it's not my problem. I don't go into details, but I got tired of making others feel better when I told them about my condition when some didn't even ask me if I was OK. There's no way to sugarcoat stroke or cancer, and I don't want anyone to think this isn't up there as a serious health issue. OK, off my soap box....sorry.
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Gennysmom...I totally agree with you, I too got tired of making others feel better. It's my problem and I'll deal with it my way. People don't want to hear the truth anyway. I also said brain tumor.
When I was feeling like crap most of the time and people would ask how are you doing I would say I'm doing okay but recovery is slow...Which they usually followed up with "But you look good" at which point I just ended the conversation. I'm not sure what person they were looking at but in my mirror I didn't really look so good. LOL
You have to have a sense of humor and a strong support system(like these boards) so you can yell, cry, vent and laugh at all the dumb things people say.
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Must be something in the AN air this week. I really feel like I'm heading for the BIG meltdown. The vertigo, tinnitus, headpain, and lack of sleep this week is really getting to me. Don't know why it get so intense sometimes. Then add my kids bickering ( last feew days of summer, really getting sick of eachother) and hubby not " gettini' it" at all cuz he's gotta go golfing. I'm about to crack.
Maybe after the kids go back to school next week I can have a private pitty party and get it out of my system. maybe it's time to give in and go back to the neuro and try some meds. I've been doing this for almost 2 yrs with no meds.
Thanks for this board to vent on.
Patti UT
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Hello fellow ANers:
Reading this thread and especially the last post from Patti UT made me realize how very important meeting and becoming friends with another ANer is to me. I am one of the luckiest people on earth to have an AN friend 40 miles away.
Shortly after my first post on this forum, Denise wrote to me as we had the same surgeons. (a real good reason to put your drs./state you live in etc...in your signature box) I wrote back and we decided to meet.ÂÂ
Our 2 - 3 hour visits over coffee are so good for the head. We can talk about how our families "just don't get it", how our lives have changed, how lucky we are (we are alive and having coffee & muffins!!), how our dogs understand but people don't and anything and everything else.
I shall call Denise the next time I am on the verge of a meltdown and I hope she will do the same and call me. It will be so much more fun to have a pity party with a friend. (Patti UT - you can call me when you are having yours)
This forum, emails, phone calls or in person.......how nice it is to connect with people that GET IT.
Cheers to AN friends, Kathy
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Kathy....couldn't of said it better myself!!! The forum is invaluable, but the phone talks and face to face meets are really over the top. It made all the difference in the world to me to meet Nan and see and feel her scar before I went through the same surgery. Networking is the best!!!!!!!
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Now, this is a good thread! I can't express how important it is to me to have you all. I went to the mall a few days ago and realized how 'different' I still feel. It doesn't feel very good. I realized again how much my life has changed .
This AN life is a hard one and I want to keep positive. Realizing I can start typing to people that share alot of this crud makes me feel better.
Pattibobattti
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Must be something in the AN air this week. I really feel like I'm heading for the BIG meltdown. The vertigo, tinnitus, headpain, and lack of sleep this week is really getting to me. Don't know why it get so intense sometimes. Then add my kids bickering ( last feew days of summer, really getting sick of eachother) and hubby not " gettini' it" at all cuz he's gotta go golfing. I'm about to crack.
Maybe after the kids go back to school next week I can have a private pitty party and get it out of my system. maybe it's time to give in and go back to the neuro and try some meds. I've been doing this for almost 2 yrs with no meds.
Thanks for this board to vent on.ÂÂ
Patti UT
Maybe? Maybe? There are good preventative meds for chronic headpain. The one that has helped me the most is Neurontin 900x2 a day. Get thee to a headache specialist, Wen......er, girlfriend! I did the no meds thing and then I did the too many meds thing and for the first time in nearly 4 years I feel like i'm doing the right meds. Without a headache, my energy level is better (WAAAAAAY better) and the world is better in general--the people around me even "act right" (ok ok it's me that's different, not them) All in all, life is a lot more tolerable. Just passin' this on as it was passed on to me on this forum!
Capt Deb 8)
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well i would have to add that neurontin works for some poeple but is not good at all for others.....
there is a long history of "side effects" for neurontin....
and a long legal history too.
Windsong