ANA Discussion Forum
General Category => AN Issues => Topic started by: scarriegirl on September 08, 2008, 01:28:16 pm
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hey there, i'm carrie in boston, and i was officially diagnosed a month ago after years of suffering from headaches, dizzy spells, and finally hearing loss and numbness. i was really losing my mind trying and trying for a diagnosis...had so many tests....catscans, sonograms, sinus tests, gi tests, and finally sent to a therapist to find the source of my "tension" i have had trigger point injections, accupuncture, physical therapy, i have done yoga, swimming. multitude of drugs that did nothing only to FINALLY find my AN. so i am grateful to have an answer, but in the meantime, i still have numbness headaches dizziness tinnitus extreme fatigue...and more. i have had my first two consults and am leanng towards microsurgery, but i have to wait till the 17th for the neurosurgical consult, and oct 8 for vestibular testing, and oct 21 for follow ups!!!! i am so frustrated. i feel like i have finally found an answer, but now its a whole other type of runaround. i just want to get into action and do something about this. waiting is agonizing. and i continue to be in pain. glad to find this board as noone can really understand how i feel unless they have experienced it and noone around me has. just wanted to rant a bit and thought this would be a good place to do it. thank you for making a place for me!!
-carrie
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Sorry to have to say welcome to our world. And sorry you had to go through all of that before you were finally diagnosed. I know you hate the waiting, but rushing into treatment is not what is best for you. Go to the doctors/appointments and investigate all your options. Easy for me to say, huh? I'm not the one in pain and discomfort. Just know that you are not alone.
Grace
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Hi Carrie,
I'm also sorry you were diagnosed with an AN. I'm glad you found this site. They have helped me alot, and I changed doctors, thru recommendations from this site.
It's so hard to wait, after you are diagnosed. I found that very hard to do. Where I went in Michigan, tho, actually made me a surgery date, after my first consultation.
That helped alot, just to know an actual date. I NEVER had to have vestibular testing!!!! That was one thing I didn't have to wait for. Wonder how many on this site had to have that?
Just know we are here for you.....and, you will probably find some people here that live in Boston, and maybe can recommend doctors, if you are interested.
Please take care, and know you are not alone.
I am two months post-op.........so still am recovering.
I'm praying for you.
Lacey
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Hi Carrie and welcome.
There are so so many of us located in Metro Boston and around the NE areas that can help answer questions regarding local AN follow up. there is also a very casual brunch in Worcester that we are doing in November (see this thread: http://anausa.org/forum/index.php?topic=7255.30), which is a great opportunity to face-to-face meet many other AN'ers. I'm not sure if you contacted the ANA office, but they offer a Willing-To-Talk list of folks that volunteer their time to speak on the phone to those that want to speak to someone who can understand what it is to walk in our shoes. The ANA is a terrific source for information as well as doing what you have already done... reaching out to others here.
Why don't you start to tell us about your AN? Do you know the dimensions of it? It's exact location? (Many times, the MRI written report will note all this). Have you met with any AN treating docs yet, either in Boston or elsewhere? Many of us have been treated locally, whether at Mass General or Beth Israel or other local facilities.
We are here to help... you are not alone... we do understand, as you note... as we walk this with you. I know it's scary... but try to remember this... it is benign... it is treatable... there are many folks that truly do understand... and we are here for you.
Again, welcome.
Phyl
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Hi, Carrie:
Wow, after reading about the long and torturous path you had to trek in order to receive an acoustic neuroma diagnosis, I almost hesitate to comment that I'm sorry you have a reason to be here. Still, you're here - and you are certainly welcomed. Grace gave you sound advice: don't rush things. Your pain and discomfort make that advice sound hollow, I know, but it remains sound. Some of our members have suffered with post-op complications that might have been avoided if they had more information and not 'rushed' into surgery (or radiation). We want you and any newly diagnosed AN patient to avoid that, if possible.
I was 'fortunate' in that my symptoms cropped up rather quickly and by the time I was diagnosed, surgery was my only real option. The doctor I chose wanted to do it quickly because the tumor was pressing on my brainstem, which is dangerous. I was lucky to have a great neurosurgeon and radiation oncologist. I've benefited from their expertise with a good outcome. I want you to be able to say the same thing someday so please try to be patient, research your options and choose a treatment, doctor(s) and facility carefully. An informed patient is our goal here and we'll do whatever we can to help you become one. We're not doctors and we don't pretend to have all the answers but we can offer practical advice based on our collective, real-world experience and steer you in the right direction, regarding information resources, etc. Please don't be a stranger! :)
Wishing you better days ahead.
Jim
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Hi Carrie,
Sorry to hear you have a AN but you're at the right place to sort all your options. We have many from the Boston area. I'm from NH and I'm 1 month post-op. These wonderful people on this forum are the ones that helped me a lot and they will be there for you too. Your journey has been a long one, now you know and we'll be here to help you with any questions you have. Take it one day at a time........
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Hi Carrie
We all understand your frustration. I'm a newbie as well..Just diagnost 2-3 weeks ago, but knew well beforehand what I was facin. It is an emotional roller coaster ride..Many ups and downs. One day at a time, do research, interview doctors and most of all..ask tons of questions...and its best if possible to tape ur consultations to review at a later time when your brain in not in overdrive...
Jo
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Hi Carrie-
We all understand your frustration! And, those of us who have a special need to be in control (yes, me!) can probably empathize even more with the agony of waiting. I waited just under two months from diagnosis to surgery and I can safely tell you that it won't kill you, but it will make you temporarily crazy! It is worth a little extra time, though, to find an experienced medical team that you feel comfortable with.
You've got wonderful resources to draw upon in the Boston area, so ask away. This is always a safe place to vent, cry, rant, whatever. We get it.
Debbi, just a little south of you in NJ
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~ Carrie, Im glad you found this forum its a great source of information on hand. I didnt know what to expect so I was less anxious, even being my first hospital stay ever..... apart from birth.. :) Just try not to be tense, always have positive thoughts and do pray about it too. Its been almost a year after my A.N. removal, theyre more hurdles to cross but its a part of the healing process Ive come to learn. Also get a second opinion, now that you can educate youraself, you can take notes in preparation to meet with the drs.
kEEP US POSTED
Take Care
Lisa
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Hi Carrie! So much help hear from so many nice people with a AN problem. Please read about, just to let you know your not alone. Take your time and hang in there you will come to some conclusion on what to do. There are many options and you`ll pick whats best for you. Prayers are with you along with everone here. Mickey
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Hi Carrie,
Not much new to say other than what has already been said, but I can tell you that the waiting is really frustrating. I am a month away from having treatment, and it took me awhile to get to my decision. Research, ask questions, find a good doctor and listen to your "gut". I didn't buy into the whole "gut" thing at first, but it will come in time. The "gut" really does speak to you! In the meantime, use this board as a resource. I have ranted and raved so much here, but these people still let me hang around although some have said I should take a break. Some great people here! Hang in there.
Nancy
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Carrie -
welcome to the forum; there's always room for one more :) I'm sorry it took so long for you to be diagnosed, but unfortunately that isn't uncommon.
Everyone who posted before me gave you some very sound advice, so at this point I don't have anything new to add.
I had surgery (retrosigmoid) and I also have a BAHA implant (bone-attached hearing aid) so if you want to ask anything about either of those, please don't hesitate.
You mention that you are in Boston, but I didn't see anything about the size of your AN. How large is it?
Jan
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Hi Carrie in Boston, your story sounds very similiar to mine. I go for vestibular testing Oct 22 at MEEI, and another CT scan and MRI.
It is scary in the beginning but the more you read the stories here the less afraid, at least that is how I feel. After 2 years of feeling like a hypochondriac, I finally got my diagnosis, but I didn't want it, I was settling into my hypochondria role. You will get lots of support here and I think the time we have to make decisions on our treatment is very valuable. Right now I don't think about treatment, I just read the posts, the old archives and learn as much as I can. We are here for you, you are not alone in this journey. I am sorry you are here though.
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Hi Carrie,
You have certainly been through your share of tough times just getting a proper diagnosis. The AN diagnosis is a lousy one but it is our common bond. I never throught having an AN would also bring the blessing of meeting all the wonderful people here. Welcome to this forum -- I'm sure you will find it a wonderful source of information and comfort. Feel free to rant, rave, cry and even laugh. We will be there for you to help in whatever way we can. I think you will find this forum a wonderful scource of comfort, information, compassion and hiilarity -- we can all be very serious but we like to joke around and have fun too. It is important that you do your research and meet with other surgeons and radiation oncologists so that you can make an informed decision on treatment. I am not trying to discourage you from having microsurgery as this is t he treatment I ultimately had. I am just cautioning you to make andecision and not jump into anything. There are no do overs so make sure you have made the right decision for you!
Wendy
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Hi Carrie in Boston,
Welcome to our wonderful and supportive group. Take a deep breath and go at each of your steps toward surgery one at a time. I had microsurgery (see my signature) and I'm now 6+weeks post-op and doing fine. The after-effects of surgery for me have gotten better every single day. You will come through this in your own way and then will carry on with your life. Positive visualization helped me a lot to manage the anxiety pre-op. Keep posting and sharing; we will share with you as well and you will see that you are not alone. My son is at Berklee in Boston so I visit quite a lot. Love the city.
Best of luck to you,
Marci
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thanks for all your kind words!! so...my tumor is 2 centimeters at the longest point which i think is pretty big, but the radiologist kept telling me how tiny it is!!! anyhow, it is pressing into my brainstem and also into the facial nerve and causing me all kinds of problems which is why i just want it out. radiology just doesnt seem a good option to me as it wont shrink it...and i dont want this thing still in there pressing on nerves and my brain!!! the worst now is the crushing fatique i'm feeling. i read in another thread about the brain working extra hard to compensate for lost balance and hearing that it makes you tired faster. that makes sense! i am really hopeful for the outcome of all of this....i just want to get on with it! and today i was reminded how lucky i and all of us here are. my close friend sent me a message that she had been in the hospital all night....she is a stroke survivor....and they found an anyeurism (sp?) so she will have surgery very soon. i am humbled by her situation. i could be so much worse!! i am glad to find you all. i never even heard of AN untill i lost hearing and googled facial numbness and hearing loss!! i thought i was prepared for the diagnosis...but i guess you're never really prepared for news like that. life will go on...i will keep living....whats the choice really? i have been laughing at this the best i can and making jokes...my brother wants to know if they can find the "on" button when they're in there! ;D i look forward to having a place to deal with all this with others who get it. thanks for welcoming me!
-carrie
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Hi Carrie and welcome - sorry,I'm a little slow sometimes, but better late than never!
Feel free to rant all you want. We've all been there!
While 2 cm isn't a huge tumor, I don't think it's tiny either, so don't feel like you're making a big deal of nothing. It's something!
I have a feeling these tests you have scheduled will come up faster than you think. These things have a way of doing that - but try to keep yourself occupied with something else if you can in the mean time. I think I would be more worried if the doctors were scrambling to get you into surgery right away.
I'm sorry to hear about your friend's upcoming surgery. It seems like we all know someone who has it worse off, so it makes us keep things in perspective. Who knows, maybe you'll have matching haircuts! :D
And if they happen to find the "on" button, could you let me know where mine might be? I just asked my surgeon to clear out the cobwebs while he was in there, but I think he missed a few!
Good luck!
Lori
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Hi Carrie
I'm jumping on a little late in the conversation so I don't have much to add to what has been said -- but welcome. You've discovered a great group of people who will be with you through your journey. I know how frustrating things have been for you and how long it may seem till your surgery but things will fly by quickly. I was diagnosed with an AN a year ago this week -- I didn't have my surgery till December. It seemed like it would be a long time but there really was a lot to do in preparation -- like insurance and notifications and work issues. Before I knew it I was standing in the hospital parking lot with my daughter on surgery day wondering how I was going to get through a month without blowing my nose. Hang in there. We will be there for you -- and you have a great group in Boston and nearby to help you out. In the meantime, if you haven't already, make sure to put your date on the calendar -- the link is on my signature line.
And Lori, I think they added cobwebs to my head during surgery.
Best wishes
David
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Carrie~
Welcome to our little group - hope we can be helpful to you in this crazy time. Feel free to ask anything here...someone will answer (probably a lot of someones)!! Please PM me if I can help you in any way.
David & Lori~
I don't know about cobwebs but my SIL thinks they wiggled my optic nerve!!
K
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Hi Carrie, I am Anthony from Philadelphia (area). I had my surgery in April and I can only tell you my experience. I am getting better but I struggle daily with severe tinnutis, headaches, dizzyness, balance, stamina, frustration , yet I am convinced that this was the right decision. It is not easy and now that I am deaf on the left side, life iand being healthy is much more a priority.
One really frustrating thing is that the residual symptoms are invisible to the naked eye. Members of my family and friends say "you look great," but I feel not so great. Its the most challenging thing I've ever been through. But determination and resilience are the key, and some luck.
Feel free to let me know how you are doin.
(Hi Anthony and welcome. Please know I had to edit out your personal email address as public posting of personal contact info is not allowed publically in posts. Best to share the info in PM/Private Mail's here.... this is noted in the site Netiquettes and for your protection from Phishers, Spammers, etc. Thanks for understanding. Again, welcome! Phyl)
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I'm from Philadelphia as well, (originally), and yes, it is strange having people tell you that you look great when strange things are happening (in your face). I usually tell them I fell fine, just recovering. I do that to remind them that I am still recovering. Seems to work.
Best,
Marci
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Hi Carrie, welcome to the forum, I hope you are finding it useful, or at least comforting. :)
On the subject of vestibular testing, I have to confess that I actually enjoyed my vestibular testing. I found the technician to be very gentle and understanding and reassuring. The tests were odd, but none of them were uncomfortable for me. I spend quite a bit of time with video goggles on that record your eye movements in different positions.
In my case it was a useful result to have. Knowing the state of your balance nerve helps the doctors predict what might happen after treatment, and gives clues about where your AN originated and where it is now. I think it is a good idea for the doctors to gather as much information as they can - and the same goes for patients. If they ever want to test me again, I would be happy to go back.
Steve
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Carrie,
Steve had a good experience with his test--that logical brain of his! Some people enjoy thier MRIs also. I did OK with the test for the most part. I got dizzy when they put the water in my ears the first time, and then on the second test they did air in my ears instead of water. That made me dizzy also. I also had trouble, but not really related to the test results, when the tester asked me to count by 7s, 9s, etc. I'm not good at math. Also had to name as many states as I could that start with M, N, etc. Did you have to do the same Steve? I think the tester said it was for distraction or something like that. My tests came back within normal limits, but it was nice to have the info any way. I think I read here that someone had the balance test, and it came back normal because she engages in lots of exercise and had probably learned to compensate, something like that. I think you said, Steve, that you had some balance issues you were not aware of? Or, maybe it was someone else. It is helpfull to get all of the tests you can get--especially if insurance pays for it. I am thinking my test might be useful should I have any problems after my treatment (for comparison). I'm not fully informed on this kind of testing so take Steve's word instead of mine. Best wishes.
Nancy
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Hi Nancy (and Carrie),
Yes, I'm one of those who think the free Emerson, Lake, and Palmer concert you get inside the MRI machine is cool. 8)
I did have to name off states and foods, and it is to distract you, so they can measure your eyes natural reactions. I got stuck on a food starting with H, and felt silly for not thinking of hot dog. :-[
They picked up a little nystagmus (eye beating) when I was lying down on my right side. The report said it was too mild to be of any concern. They were also able to tell that the AN was probably on the "inferior branch," or lower branch, of the balance nerve. That is good, since it does less stuff than the superior branch. That is probably why I am a bit wobbly when turning quickly.
Steve
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Carrie,
Having read your most recent post I can understand why you would want to scream. This is a great place to vent -- we've all been at the point where you just need to and understand that need in others. I know all the steps and waiting leading up to surgery are frustrating but the time will pass more quickly if you try to keep busy. I kept myself very busy in the weeks prior to my surgery and found I barely had enough time to get everything I needed to done the week before it. Just keep reminding yourself that you will get through this and know that we willl be here to help and support you in whatever way we can.
Sending you a hug and best wishes,
Wendy
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water in my ears!?!?!?!?!?!?!?! they feel blocked up enough already!!! on top of my hearing loss my sinuses are going crazy in this great new england end of summer pollen surge! its so nice to hear others complain about things i feel! it is SO hard to look fine on the outside and feel so totally sick on the inside. i also hate the fact that people treat me differently when they find out. or act like its the end of the world. i need to stay positive...and i find myself comforting everyone else! they dont understand this is the way out of pain for me...not a horrible sentence. when it comes down to it...it is just a medical procedure, not the end of the world. unfortunately it sounds really scary. my problem is trying not to let the depression take over. i am in such a state of limbo and i HATE it. keeping busy is good...but lots of times i just feel too sick to do anything...like right now my head is killing me and unfortunately my husband is vacuuming!!! great that he is...but it is hurting my head! and at the same time as all of this my bipolar brother is coming unglued and is about to have another psychotic episode so i am having to comfort my mother through that as well as comfort her about me. why am i doing the caretaking??? i need to be taken care of!!!!! i guess i found the right place on this board. anyone else had to deal with this stuff??
carrie
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Wish I could give you a hug Carrie. Seek them out if you can, and if you are a "hugger". I have gotten to the point where I don't talk much about my AN to friends who just don't "get it". Most of these people just try to downplay it in my case, and that is the worst thing ever. For instance, when I complain about my tinnitus bothering me, someone will say, "I have it too." Or, when my ear got really plugged up yesterday, one of my friends said, "Oh, that happens to me all of the time." The thing is is that a lot of people have tinnitus and have their ears get clogged up, but they don't have a brain tumor. Plus, most people don't know what these ANs are, and they have no clue how to react. Some of my friends and my husband have been interested enough to read about ANs, and they are the most sensitive and caring supporters of all. This AN board is helpful also. However, I hate to say it, some have it worse than others. But, a lot of people here have very positive stories, and I try to focus on those more.
I am a caretaker also. I have bipolar disorder, and it has been under control for a long time. Just thinking back on those days when I was having lots of trouble with my bipolar, I can see how I drained the folks around me. My husband thought he could "fix" me, and maybe that is what you are trying to do with your mom and brother. If you have other siblings or friends who can help out with your mom and brother, then you might have to ask them for help. It is hard to ask for help when you are a caretaker, but in this case, you need to take care of yourself first. Easy for me to say because I am not in your shoes. As for your husband vacuuming . . . GREAT! But, I bet you would rather have dirty floors sometimes rather than listening to that noise. I have had to tell my husband to quit practicing his trombone sometimes, and he usually complies. But, when he is practicing for a concert, then I know he needs to practice so I will go for a walk or go over to a friend's house.
I didn't mean to scare you with the water in your ears. I think most doctors offices are using the newer equipment with the air in the ear. I have always had bad motion sickness, and the audiologist said that is probably what caused my dizziness. She said it wasn't related to my AN. You will do fine. The first balance test I had in 2005 was my ENTs idea. I asked for the second test. So, it wasn't so bad that I wanted to avoid it, if that makes you feel better.
I volunteer on the oncology unit at The Children's Hospital, and when I see the kids with the malignant brain tumors, I feel guilty when I think about mine--since it is benign. But, you know what, this AN is an important part of my life right now. So don't downplay it. I think because there are so many bad things going on in our world, we don't give ourselves permission to feel scared and worried about our own stuff. My son is off to Iraq in Nov., and it definitely has taken the importance off of my AN, but at the same time I have a right to be worried about my AN . . . but in a different way (and that doesn't make me an insensitive person). If you feel like you need to PM me, please feel free. I rant and rave for the most part on this board, but I can listen. I PM a lot of people here on a regular basis, and it has been extremely helpful. Take care. Thinking of you.
Nancy
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Steve,
On a side note. When I was asked for a food that starts with a "F", I couldn't come up with anything. Since I'm from the South, you would think that this would have been an easy one for me: Fried Chicken, Fried Catfish, Fried Shrimp, Fried Okra, Fried Tomatoes . . . . . . ;D ;D ;D ;D ;D
Nancy
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I had to give boy's names for each letter of the alphabet for one ear, and then girl's names for the other ear. I knew it was just for a distraction, but geez, she really pressed the issue when I couldn't think of a boy name that started with "Q". Really, I think we could have just skipped over it instead of worrying about it too much. I was beginning to think she was just trying to think of a name for when she has kids of her own.
Lori
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Ha Ha Ha . . .Lori,
That's funny. I had to do the boy name and girl name, too. I said Quinn for the girl name, but I couldn't think of a "Q" name for the boy. But, I think Quinn can go both ways. I am sure she has heard a lot of different names, and I am sure she is making a list---or writing one of those BABYS NAMES books!!!
Nancy ;D
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"Quincy" or "Q-bert"
K
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geez!! i'm gonna have to start writing these down!
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Rant away Carrie!!!!!!!!!! >:( >:(
Been there done that and totally understand. I was misdiagnosed for at least 10 years, had a tube in my ear from an ENT and when that didn't work wanted to do a sinus window..... the list goes on and then my AN presented itself when I started losing my balance in front of my kindergarten students and my face went numb. One little MRI and there it was the bugger. I am sooo sorry you or anyone has to go through this but you could not have found a better group of people to support you and who TRULY understand. Take care this will be over soon enough and stressing about it only makes this worse. Easier said then done.
Keep us posted, we are here for you.
Michelle ;D
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Kay and Nancy -
Where were you when I needed you?? Well, if I ever have to have that test again, I'm all set.
Lori
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Now that some celebrity has a new baby called "Zuma", we have a new boy name for Z!!! ;D ;D ;D
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I hope for the girl's name with Z, that you remember Zoe!!!
It is getting to be more "common" now, but when I was growing up, I think I was the only Zoe in the whole world. Or at least it felt that way. I hated it, but luv it now. 8)
Is this what is meant by hijacking???? ;) Sorry.
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My "Z" girl name was Zoe. I love that name. Didn't even have to think twice about that one. Zach was my "Z" boy name. I like that one also. Almost named my son that, but Steven it was instead. Please send good thoughts to my "S" boy name who is leaving for Iraq in November :(. Nancy
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Let's get back on topic folks!
thanks!
Phyl
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Have I mentioned that this is my favorite place to rant? Really, it's the only place you do it and feel supported and understood totally. We also seem to share a fair amount of joy, which is often. You will feel that way when it's all said and done.
Write again,
Marci
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Hi Carrie,
Hope you are feeling OK today. There are so many ups and downs trying to deal with these ANs. To stay on topic about wanting to scream . . . I went to a Rockies baseball game last weekend, and it was the perfect place to scream. It helped a lot. So many emotions get pent up, and it is especially difficult to deal with the AN stuff when there is so much going on in one's life. Hang in there. Thinking of you.
Nancy
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someone should start another post about the vestibular testing so we who are facing it know what to expect!!
back to my particular need to scream.....as much as i want people to reach out to me, i also feel like i am wrapping a big fuzzy emotional blankie around myself and only letting certain people in. i want to yell at people to go away....and yell at them to come closer. it is a huge conflict. and emotionally exhausting. anyone else felt like this??? hearing your opinions and experiences is helping me so much to get through the time i have to wait till my neurosurgical consult on wed. learning all i can is the only thing that makes me feel like i'm doing anything proactive.
xx
carrie
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Hi Carrie,
Yes, I understand exactly what you mean. It's a combination of "I need you all to take care of me" and "go away so I can deal with this". If I had more time between dx and surgery I would have seen my therapist. As it was, one of the doctor's I saw put me on Zanax (sp?) and that really helped a great deal, though I cut the pills in half. I did see my therapist a few times after surgery. I also felt myself trying to be strong for those closest to me (I didn't want them to be scared) but allowed a dear friend to know just how terrified I was. Even now, with the side-effects (relatively minor but driving me crazy), I tell most people I'm just fine.
Hang in there.
Marci
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Carrie,
I can relate to how you are feeling too. The only people I wanted to talk to about this were my doctor, older sister and my youngest brother and the people here on this forum. Others who knew were too freaked out themselves to really be of much help and sometimes made me feel worse or like I needed to comfort them. Learning everything I could about ANs and their treatment was the best thing I did for myself. It made me feel more in control of the situation and led to my certainty that my choice of treatment was right for me. Ranting is a necessary part of the process for many of us, especially when you've decided what to do and it seems so far away. Hang in there.
Best wishes,
Wendy
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Hi Cheri,
Yes. ABR is auditory brainstem response, so that one is about the status of the hearing nerve itself. It involves a wire taped to your head, and clicks in an ear piece. The balance tests can tell if the superior or inferior nerve is affected - usually one of the two branches is the origin of the AN. In my case it was the inferior, the more common origin, which has less of an impact on overall balance. I hope that is the case for you, too!
Steve
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Carrie- that would be the "jeckel/hyde" phenomenum! And, yes, I went through it too. I've also felt like that at times post surgery too - sometimes it's all I want to talk about and other times I almost feel annoyed if someone asks me how I'm feeling. I am normally a really nice person, so when I get those "go away" moments I almost want to ask myself - who the heck are you and what are you doing in my body?? ;D It helps to let those closest to you know that you may sometimes just not want to talk - it kind of takes some of the pressure off when you are feeling like you'd rather be left alone. Gads, I am rambling a bit here - sorry. I hope this makes sense?
Debbi - come closer ... no, get away! :D
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Hi Carrie,
I have days when I feel like everything is fine. Then I feel guilty for complaining because after all the tumor is benign, and it's not gonna kill me. Then I feel guilty because there is so much worse happening out there in our world. Then I realize that I have a right to feel upset, angry, and want to "scream". Seems like the feelings go in and out--never predictable. So, I'll pace and have anxiety attacks, and then 20 minutes later I'll go outside and realize what a beautiful day we are having. And, then a cloud will cover the sun, and I'll get angry because I have to go inside and change to long sleeves. Then I'll go back outside, and the sun has come from behind the cloud. And, then if I spill something all over the floor, no problem--just clean it up. These ANs can cause some "nutty" stuff. For most I figure, but maybe for some . . . not so much. Count me in on the "nutty" stuff. In my opinion, "nutty" stuff is just a normal reaction to something we didn't ask for--this AN.
As for the ABR test, Steve, I don't have the technical terms right in front of me, but the only problem I had was tracking the dots. Doctors said this wasn't related to the AN--medications most likely. My husband said it was probably a "control" thing since I am such a "control freak". I read somewhere on a website that it could be medication or lack of cooperation on the patient's part. Do you know anything about this? I had the same problem on both of the ABR tests I have had.
Hang in there Carrie,
Nancy
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well...this is getting easier with every passing day..but i really resent peoples need to project their fear onto me. i got a card today telling me to be strong and to keep my head up and soon enough i will be enjoying my time in my pjs catching up on reading. i AM strong! i AM keeping my head up...and really....enjoying recovery from a brain tumor
???????
if they are afraid keep it to themselves!! i have ENOUGH to deal with. i don't need others fears projected on me! f that. i only have enough energy to be strong for me...and not even that some of the time!
if these people were not family members i would just cut them loose...but what can ya do? day by day i guess
xx
carrie
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carrie,
the initial anxiety does ease in time.... and the love and support of everyone here certainly helps that cause. Honestly, I'm tickled you received a "thinking of you" card... it helps to remind us (and you) just how loved you are... and in times like this, just how much your 'inner circle" is there to help support you. It's those folks that tolerate the thick and thin of situations like this... and honestly, you are truly blessed to have them in your life.
Suggestion... .please consider the brunch in Worcester:
http://anausa.org/forum/index.php?topic=7255.new#new
If anything is to help bring you peace of mind about this journey, come meet some of the folks that have already walked in your shoes. Come see how everyone is doing... how everyone looks.... gain a few pounds over the food.... but most of all... meet folks face to face to really "see" what this journey is about. Please conisder it.
Hang tough!
Phyl
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Carrie~
I agree with Phyl about the card. Aren't you glad that you have people in your life that care enough to take time and get a card and send it? Trust me, some day, those cards will mean even more to you. I still have (in a trunk) all the cards I received when I had surgery. Sometimes people don't know what to say, or don't want to call & bother you, but just want you to know that they are thinking of you. What a great support system!!
K
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Carrie,
I know it gets frustrating, but don't feel like you have to help other people deal with their fears about your surgery. I don't think they expect you to. I think they just want you to know that they are concerned for you (and you would be for them if the tables were turned, I'm sure). I don't think they are expecting you to comfort them. Sometimes it's hard to know what to say or do in these situations that don't come up every day. And we all know people who say or do something really stupid when something like this comes up. Just remember they are trying and they truly mean well.
If I were you, I'd just thank them for the thoughts and not worry too much about it. It'll be nice to know that you've got so many people pulling for you and praying for your recovery on those bad days.
And if you play your cards right, you CAN enjoy your recovery from brain surgery - take them up on their offers for meals, cleaning your house, doing your grocery shopping! Sounds like a win-win situation! How often does that happen?? :D
I hope you are able to make it to the brunch! I hear the apple dumplings are awesome! You can have one for me!
Lori
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Hi Carrie.
I totally agree on what has been said. Especially with Debbie on the Jekyll and Hyde thing.
When I am in my "leave me alone"-mode and people ask me how I feel, I simply say "I feel terrible, and there is nothing I can do about it".
It may seem a bit rude, but it is honest and ends further conversation with people outside the closest relatives and friends.
About expectations on recovery after surgery. I am planning to make DVD's of the home made VHS video featuring the kids. And I have almost convinced my wife, that we have to buy a Nintendo Wii for me the exercise my balance skills ;D. I still have to work on that but I will get there.
In any case, I hope reading some of this feels comforting to you.
Best regards, Kenneth
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Hi Carrie,
I am always the one to step out of the box!!! I could probably echo what a lot have said about appreciating those cards, etc., and maybe in time you will. But, you have strong anger inside right now. No one knows what it is like to be in your shoes except you. If you resent the cards and projections of others, then so be it. It is what it is. Maybe . . . and just a suggestion . . . if you haven't already thrown those cards away, you could make an "angry box" and put the cards in there. You could also write down some of the comments that others have said that seem insensitive and/or inappropriate and put them in there, also. Write out all of your anger and stuff it in that box. I did this once a long time ago over another issue, and it helped me a lot. Eventually, I got to the point where I could let the anger go, and it was such an empowering thing when one day I was able to throw that box in the dumpster. And, as some mentioned above, there is also the chance that you might want to take the cards out one day and perhaps look at them in a different way . . . your choice.
I commend you for confronting your anger. Anger is a powerful emotion, and it can be used in a productive way. Do what you need to do for you. But, be careful that that anger doesn't get turned inside too much because it could possibly cause some depression. Hopefully you have a friend or a relative to help you get through this. You don't have to go it alone.
No psychological advice meant to be given here, Carrie. If what I said above doesn't work for you, then no biggie. Just know that you have a place to "vent" here. Thinking of you. :)
Take Care,
Nancy
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Hi Carry in Boston-
I am Cindy from N.H. i was diagnosed 5/6/08 w/ 2cm AN i had it removed at Dartmouth Hitchcock Medical Center in Lebanan,N.H.
I too went through lots n lots of other diagnosis before my ear started ringing in feb.& didn't stop i went ER & asked for catscan off from there to ENT off from there to Dartmouth.
The docs said i had inner ear infections for 10 years(vertigo/sinus/clogged ear/vomit !)10 YEARS of it....I am happy to say Its out..Now i need to rest lots & heal lots.
Think it through & plan ahead.The plan ahead i can not stress enough if you have children or a job or any kind of life.Not to scare you but it will be put on hold temporaroly.
In the end i am sure you will feel relieved.
This is the best place for you to be now i wish i had discovered it before my surgery.Take care & hang in.keep us posted.
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nancy,
thank you for allowing the anger to come out. i appreciate the sentiment in everyone else's comments about having people care about me...but that doesn't mean i am not very self centered right now....in a good way!! i have to take care of me. i really have a great support system...my husband is amazing as is my mom...and my dad in his always logical spock sort of way. but the people that love me the most are saying basically how happy they are to know i have found an answer and am on my way to recovery....so to hear others (and the person who sent the card hasn't spoken to me in 15 years) express their fears and negativity is not helpful. i am positive and i need others to be as well. there is no room in my life right now for negativity! i am off to the neurosurgeon tommorrow and i will let you know how it goes. thanks for all the support here! it is a lifesaver.
xoxo
carrie
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Hi Carrie,
Glad you mentioned that the card was sent from someone you haven't spoken to in 15 years. I would really resent that, too. Like, why now? Maybe that person is caught up in their own drama, maybe not, but still 15 years ???. I was scared of my anger for so many years. I finally got to therapy many years ago because I had become very depressed. I found out I had a ton of anger stuffed inside. Once someone gave me "permission" to let it out, it was like the flood gates opened up. Confronting my anger made me feel "human", if that makes any sense. I think your anger will help you heal--mentally, physically and spritually. Feeling self-centered right now is totally OK. It is what is helping you get through this whole crisis. Earlier you said you were a caretaker. I can relate. Now it is time to take care of you, and if someone out there is blocking your way, set them aside. I like this saying, "Surround yourself with people who respect you and treat you well." Definitely applies in this situation, or at least for me. I think in the long run acknowledging your anger will help you go forward in your AN journey. It will lead you to acceptance, and then allow you to concentrate on making an informed decision. Hang in there (sometimes those words don't help, but I mean them in a positive way), and allow your support system to be there for you in whatever way you need them to be. Sometimes you have to say "back off". Just be honest with them. Tell them you love them, but you need to make the calls right now.
Cheri,
Whew!!! As I was reading your story I was so afraid you were going to let your dad come see you when you have your surgery. You don't need him hanging around while you are going through your own turmoil of dealing with your AN. Not a good time to work on a broken relationship in my opinion. Besides, if you had wanted him to come, you would have told him about your AN in the first place--not your brothers (Hopefully they had good intentions when they told your dad about your AN). Your letter to your dad was a means of taking care of you. You should be proud of yourself for writing that email and setting limits. I like what you said, "It's MY tumor, MINE!" Good words to remember when going to see doctors. also. Although most docs have good intentions, I think you have to do what feels right for you instead of giving the doc all of the control. I think it is good to get other opinions, research and ask as many questions as you have to in order to make an informed decision about YOUR tumor. Then once you have made your informed decision, then you can put YOUR tumor in the hands of a doctor you trust.
Carrie and Cheri . . . You are strong women, and I admire you for taking charge of how you want to deal with your AN. My GK treatment is three weeks away. It has been a heck of a process getting through this mess with having to deal with so many obstacles along the way. For the most part, people have been very kind and respectful, but I will share a few comments that have not been helpful: "Oh, it's benign so you don't have to worry about anything." "Oh, you have a little AN so you are lucky." (True on that one I guess, but sometimes this AN feels HUGE). "Just get it zapped and then you don't have to worry about it anymore." . . . . Maybe these people mean well, but at the same time have they taken the time to ask questions or learn more about ANs. My husband has been great . . . read the material about ANs, gone with me to doctor appts. when I asked him to, backed off when I asked him to, and treated me with respect while I was in the decision phase. But, he has been a pain in the butt sometimes, too. However, he is big enough to say "sorry", and that means a lot.
So, I'll quit my rambling. I could continue on my soap box, but I won't. Everyone has a different story, different theories, and different coping mechanisms. But, for the most part, the people on this board seem to come through on the other side with positive outcomes. I am trying to stay as positive as possible and hoping that something good will come from dealing with this AN--like, will it make me a stronger person in the long run--hope so ::) ::) ::).
Nancy
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It's late, and I can't get to sleep. Just thought I'd express how this AN affects me.
:) ;) :D ;D >:( :( :o 8) ??? ::) :P :-[ :-X :-\ :-* :'(
That just about covers it all. UPS and DOWNS AND IN BETWEEN!!! I'll take all of the ;D ;D ;D I can get!!!
Nancy ;D
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I hear ya Nancy. Oh only with my good ear!!! ::)
Trying hard to be strong and today I wanna cry! It is meet the teacher BBQ tonight (I am the teacher) and I am tired of being brave. Some days are a bit more overwhelming than other days. I wanna be back to normal so bad (it is so hard with my face) and maybe that will never happen. :'( :'( :'( My eye is a pain - please God let this pass.
Michelle :'(
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Good luck with the BBQ, Michelle. I know what you mean about wanting to be normal again.
David
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Big hug to you Cheri! I understand, the waiting is very hard. Push those negative thoughts out! It is almost over and a new begininng without a tumour! ;D
Thanks David, I will where perfume (at least I will smell nice). My friend (means well) asked me when I can wear makeup again? I know I look like I am tired without it but wouldn't dare wear eye makeup with this eye the way it is. Pity party for me today!
Michelle :(
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I mean wear (what kinda teacher am I?) Oh thanks Steve I can use the I had brain surgery again, I am sure I am only at 189 times lots more before I am at one million. ;D ;D ;D
Michelle
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Cheri
As a postie, the only comfort that I can give you now is that in three weeks it will be over and you'll be on your way to recovery.
Philippians 4:13
David
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Michelle -
I know how frustrating it is to want to feel normal again. I went to my daughter's first field trip today and of course, had to be social with all the other parents and the kids. All I keep thinking about is what I must look like. But then I remind myself that these kids are probably going to learn to be more accepting and maybe when they encounter another person who might look different, they'll be a little more compassionate and realize that inside, they are the same. I'll bet all of your students will learn that and they and their parents will be grateful for it.
Enjoy the BBQ!
Lori