ANA Discussion Forum
General Category => AN Issues => Topic started by: kimbo on August 09, 2008, 11:47:51 pm
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Hi
This is weird - I have never been in a chat room before or anything like this.
I am from Eastern Australia and I discovered this forum by accident (probably like others) I have just been diagnosed with an AN (8/8/08), the specialist mentioned that the tumor measured 13mm x 9mm. My symptoms are moderate hearing loss (4 years) right ear and tolerable tinnitus so I am more than happy to be a "wait and watch". I have done extensive reading and most of it has blown me away particulaly listening the post operative stories and the issues that some of you have dealt with and I might have to deal with. I don't know whether its different in the USA I just hope we have the quality of surgeons. The doctor said that he will suggest surgery (Trans Lab, I think) if my symptoms become worse or the AN measures 15mm. I am praying that the tumor gets really tired and just stops growing - that would be a wonderful outcome. The specialist mentioned that when he looks at the scan it is not only the size reported from the radiographer that he is interested in but it is also how much spinal fluid can be seen between the tumor the the cerebellum; less fluid visible will indicate that it is actively growing.
My hopes are that my family (husband, two boys) will not go through to much and I have a very lazy tumor.
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Hi Kimbo,
Welcome to the forum! We have a few others from Australia, maybe one will drop in. Since it is 11 pm here on the west coast of the US, you may not see other replies till tomorrow. It is probably lunch time there, right?
It is good that your AN is small, and that you are starting off with wait and watch. Do you know when you will have another MRI? With a small AN, your chances of having major side effects are pretty small, so don't worry about it. For that size, you might also want to look at radiation treatment, which would have a better chance of preserving your hearing. But you have plenty of time for all that.
Besides getting information on treatment options, this is a good place to discuss things like how your AN will affect your family, and to get support for any issues you may be going through. I hope you find it to be helpful.
Steve
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Thanks Steve your reply was great and comforting. Its 4:40pm on Sunday afternoon, cold, windy and raining; the Olympics is on the tele, my husband is doing the weekly shopping (good fella) and I am on the computer - so obviously I am not getting much done.
I have found it hard to discuss my diagnosis with anyone (I don't think they realise that it could be quite serious) and I have been quite emotional; I like that you said my tumor is small and major side effects are not as likely with a larger tumor. My quality of life is very important - my family has good quality time together water skiing and just hanging out (when not working fulltime or running around with football on weekends). My best outcome would be to keep skiing for the next 3 seasons or MORE and then to ski after surgery. I really enjoy this time with my family its called family glue.
Radiation was not recommended by 2 specialists - keeping my hearing is not so important for me as I have been living with moderate/severe loss for 4 years. Facial nerve, balance and returning to work productively are very important.
Kim
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Welcome Kimbo to our wonderful world of AN'ers. I myself was in watch and wait for 1 1/2 years. Now this week, August 6th I had my tumor removed by retrosigmoid surgery. After 3 days in the hospital I was sent home. I have lost 75% of my left hearing, I have balance and dizziness issues and tasting issues. Those I can deal with. My experience was to research, research, research.......I went into surgery very calm, knew I would be feeling lousy for a few days, then was lucky to go home 3 days after surgery. Don't be afraid to asks a lot of questions. This forum is full of information. Well sorry you have to join our club, but it's the best.....Hang in there, and my prayers are with you on this AN journey.
SueL/NH :)
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Hi SueL
My prayers are with you post surgery. You sound strong and I look forward to hearing your thoughts, feelings as you travel your journey of recovery. Well done you deserve a medal (Gold) as all the people I have found this Forum. You are to be congratulated for sharing, caring and just being there if somebody needs some kind words or advice. What would be your ultimate goal in recovery?
Kim
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Kim
Welcome to the AN forum. I believe you will find a group of supporters who will be here for you through your research, decision making and support cycle. We are not doctors (at least most of us), but we know exactly how you are feeling because we have been there, too. I joined in late June 2008 when I found my acoustic neuroma was growing again and I had failed radiation therapy from 6 years ago. I have leaned on this group to help me decide what was best for me in this second round of treatment and what I might expect from the various decisions that I considered. Like you, I had never been in a chat group or forum in my life. This site is filled with information spanning many subjects, situations and treatment plans. Explore. Explore. Explore. The more educated I became, the more empowered I felt and the more confident I became in my decision. The good news you will keep hearing from everyone is that you have the luxury of being able to take the time to make the decision that feels right for you. I spent a lot of time on the forum reading, researching and following up with people personally when something seemed very relevant to my situation.
I am 10 days post-surgery and home in Denver, Colorado fully recuperating from a succesfful removal of my acoustic neuroma. This forum was a God-send to me during the last two months and if I can support you in any way, please let me know.
All the best,
Kathleen
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this is my first post and please understand i am no md but have done extensive research on my AN. in the US a tumor of your size with some hearing would be a candidate for ck. ask to visit a radiation doc and do lots of research. pubmed has many retrospective studies that may help you decide.
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Kim,
Let me be the next to welcome to the forum.
The diagnosis of a "brain tumor" is terrifying at first until you find out that this benign condition has many treatment options. You are doing the right thing by going out and trying to find information before making a commitment to a treatment. That period of waiting to see the doctor for a consult can be unnerving. Know that because it is a benign condition, that you have the time to do your fact finding. With your size tumor, you will have a host of treatment options.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information. I learned that there is no one *best* way to treat it. It ends up being an individual decision. (see my thread that guides you through the decision making process).
http://anausa.org/forum/index.php?topic=5786.msg53229#msg53229
Kindest regards,
Kate
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Hi Kim-
So, it is now approaching the middle of the night is Oz, so hope you are sleeping and not reading this until tomorrow morning!
Welcome to our group. Like everyone else has said, you will find an amazing amount of information here as well as an amazing amount of support. I was diagnosed earlier this year, had surgery, and am now about 3 1/2 months post up. I have leaned on this group all the way through my journey and am eternally grateful to my friends here for their support and wisdom. And, no, I'd never been active on other message boards either!
One thing I'd say is not to let some of the stories scare you. Everyone is different and you do tend to hear more from those of us who had complications than from those who had flawless recoveries. I believe that far more folks have flawless than flawed recoveries! Just arrm youself with as much information as possible!
You may also want to post a question on the cyber knife forum to see if they think you'd be a candidate for radio-surgery. That web address is:
http://www.cyberknifesupport.org/forum/ (http://www.cyberknifesupport.org/forum/)
I wasn't a candidate for radiation (had translab) but I before I knew that, I posted some questions here and got great response from the doctors there.
I'm also happy to talk with you if you have Skype? I have some clients in Aus who I talk with weekly via skype and it works out quite well - not to mention that it is free!
Don't get overwhelmed, Kim. There's a lot to absorb and much of it is scary so give yourself time to digest everything. And ask as many questions here as you'd like!
Cheers!
Debbi, from New Hersey
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Welcome to our little place in the world, kimbo. You are more than welcome to ask all the questions you need to ask. We've all been there. Some us have had surgery, others CK, others GK, and some have even been in watch and wait. Some have huge ones and others smaller ones.. We are all here to support you in your journey in whatever way we can. As you can see by my signature, I had a rather large one with very little option but surgery which I had just after Debbi's. I can definitely say that there is life after surgery, if you end up going that route. I go in about a month camping with my daughter where we go horseback riding and I plan on doing it with her (she's 8). I'm not sure if I'm ready for a bike or water skiing yet (something I don't do often anyway), but there is life afterward and I plan on making the best of it all. Rest assured that whille this is serious, it's generally not life threatening. You WILL be there for your kids as they get older. Do yourself a favor and do lots of research into different options you have with a generally small tumor. They are all on the table, to me. We will be here to support you all along the way and we have been there. You will be hard pressed not to find someone who's had the same symtoms, feelings, etc.. Welcome aboard, mate! ;)
Brian
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Kim, Welcome, you will find a great amount of support and info here. You mentioned that two docs did not recommend radiation, but you still may want to research your options since your AN is in the small category. I encourage you to check out Kate B's anworld, it was very helpful to me when I was researching my options. The link is at the bottom of her signature.
Take your time and know that we are here for you.
Julie
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Hi Kim
Welcome to the family. I can't add much to what everyone else has said. But I do want you to know that you have a fellow Aussie on this forum -- he is Chambo (Simon). While he is in Melbourne and I'm thinking not that close to you, maybe you might want to get in touch.
By the way, you are in a good place with a lot of people who care. Best wishes on your journey.
David
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Thanks everyone - your wishes are great.
LADavid - Thanks for telling me about the Aussie from Melbourne it will be good to talk to when he visits. Melbourne is a big city 6 hours South of where I live, my town has a 10,000 population; as far as I know there is 1 wait and watch & 3 post surgery AN'ers in my town. I am in contact with the wait and watcher; the others are a little private.
The only options available within Australia are wait & watch, radiotherapy and surgery. The specialist said the other treatments (CK and GK are not an option of treatment in Australia). It sounds like CK and GK are a popular option. It will have to be surgery or nothing when my turn arrives as finances will not cover a trip OS. I have medical insurance thank goodness, it would be awful not to be able to have the treatment you need because of money.
Thank you JulieW4 I will check our Kate B's anworld.
Thanks again
Kim
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Hi Kim
I thoughtI'd join the welcome wagon. Sorry to hear you have an AN, but you've come to the right place. The forum offers a wealth of information and support and the people here are great! Having had surgery just over two weeks ago I can absolutely say I wouldn't have had the great outcome I did without the support of my fellow forumites. Feel free to ask any questions, joke around, and vent when you need to. We are all here to support you.
Wishing you all the best,
Wendy
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Hi kimbo! Approx. last year this time I was also diognosed with AN with about the same size and symptoms as you. I did the same as you W+W hoping what your hoping that maybe the tumor has ran its course. So far so good "stable" with another mri coming in Sept. I know it`s hard to deal with but wanted to give you a little reassurance that there is time to adjust to whatever this situation comes to and make a good decision. I`m treating mine the way it teats me as far as course of action. This site also is the greatest with the greatest of people from everywhere sharing there experiences. Will help you so much. My prayers are with you! Mickey P.S. Everythings gonna be allright!
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Hi Kim,
Welcome to this very special place. We learn and lean on each other. That support is incredibly important to all of us, I think. You have the luxury of time to find the right doctors and the right hospital. Once you've made your decision (and you sound like a planner to me!), you will do what needs to be done to preserve your health, and your family and friends will rally round you in ways that might surprise you. And you will be ok. You will. Keep us informed as you go; we will want to know how you are doing. I didn't do any watching and waiting, but there are a lot of folks on this forum in that situation that you should be able to relate to. We can all relate to your diagnosis, your hopes and your fears.
Best,
Marci
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Hello, Kimbo:
Let me add my greeting to the chorus of welcoming messages and add that, although all of the best advice has been offered, i.e. radiation treatment, I'm still pleased that you've found the ANA website and message boards, which, as has been amply stated, are chock-full of information and support. I trust you'll be back often for whatever questions you may have, which will probably be many. Don't be timid about posting a question here because we understand your concerns and likely bewilderment when you receive conflicting statements from medical professionals and/or see 'horror stories' (poor outcomes from surgery or radiation) on internet forums such as this and then, begin stressing - unnecessarily. Some of us are probably older than you, had an Acoustic Neuroma that was much larger than yours, underwent both surgery and radiation and came out just fine with only very minor residual effects, if any. I'm one of those folks. :)
See you around, Kimbo!
Jim
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Hey Kimbo and WELCOME!
As everyone has said - you probably didn't want to find this site and belong, but it is a GREAT place to be! I had surgery 12 years ago and I guess most people would say that I had a lot of "negative" outcomes, but I don't really think so. I have a great life now with 3 beautiful daughters and a wonderful, supportive husband. Life couldn't get much better! Check out my blog (address below) and see what life is like for me 12 years after surgery (& lots of issues along the way!)!!! ;D Please feel free to contact me if you would like to converse more!
K
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Hi Kimbo and welcome!
Sorry I'm "getting here" so late, but I went out of town just about the time you joined the forum and I just recently returned.
I don't really have anything to add to the wonderful advice that everyone else has given you; just wanted to say "hi" :)
Jan
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Hi Kim,
Have you ever been prescribed prednisone for your hearing loss? It doesn't make sense to me but when I first had my hearing tested, I had moderate to severe hearing loss. Speech discrimination in my left ear was 78%. After a round of prednisone, the ear was normal. Speech discrimination was 100%.
Laura
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Laura
Thanks for your reply and yes I have had prednisone twice with minimal or no effect - I only wish the drug did that trick on me my family would not be so frustrated with my hearing loss and me saying "what did you say"
Kim
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Hi Kimbo...
Greetings from a fellow Aussie (I am Canadian but lived in Oz for nearly 5 years and got citizenship, but now back in Toronto Canada).
I am sorry about your diagnosis but glad you found this site as you will find the people here a great source of information, support, and hope. I was diagnosed in January this year and just had surgery in June. I know that the "horror" stories of surgery are overwhelming to the otherwise healthy, but in the end i surprised myself and had surgery. As per my "update" post of a few days ago, i think it is harder dealing with the diagnosis and decisions around treatment that recovering from surgery, but that is just my opinion.
I am about 10 weeks post surgery and happy to answer any questions if you want to PM me.
Where are you in NSW? I lived in Adelaide originally and then Sydney for the last few years.
We are all here for you.
Trish
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Trish
Thank you for your wishes and support and yes some of the surgery stories are overwhelming but since I have been of the forum (I havn't done much else mind you) I have found the knowledge and experiences really helpful. I believe just in 2 weeks I am a better emotionally.
I live in New South Wales in a small town called Young (Cherry Capital of Australia). The town is a farming community mainly based on stone fruit, broad acre cropping (wheat & canola) and stock. My husband lived in Canada back in the early 1980's for 18 months; he was in Alberta I think. I will try and find your post and read your story. I hope your recovery meets your expecatations and wishes; I can see you have a young family.
Look forward to reading your progress.
Kim
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Hi
I am considered a "Newbie" and was dx back in March of 08. I am still learning and trying to spend as much time as I can on this forum. I am on the "watch and wait" list also, mine is considered small. My advise to you is to use this forum as much as you can. There is so much to learn. Ask questions as you need to. I get confused easily because there is so much information but the people on this forum are very helpful and will answer any question.
Welcome
LisaP
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LisaP - Good to meet you, nothing like a fellow W&W. What are your symptoms? Yes it is confusing there is lso much information to absorb. I am looking forward to the day that I can put the thoughts of the AN back it my mind and just get on with it. It seems to consumed me a bit over the past two weeks; however I expect that is normal.
Look forward to hearing your journey.
Kim.
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Hi Kim,
Welcome to the site! You've already met many of the great folks here and received their good advice. I just wanted to say hello. Sounds like you have a good positive attitude and are doing everything you can to educate yourself. I have been hanging out here for about six months and continue to learn so much. Keep us posted and we all wish you the best!
Cindy
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Kim,
As you and LisaP have indicated, the beginning is all about getting as much info as you can, so you can understand what you have and what your options are, and make informed decisions. I spent pretty much 2 months straight, reading research and whatever i could find about ANs and treatment. Like you, i had only some hearing loss and tinnitus, both of whichwere, in hindsight, completely tolerable. I had no other symptoms and an otherwise "unremarkable" history ... healthy, fit, and happy. After being told i had a "tumor" (i will never forget that day) I had many nights waking up wondering what i would do, what would happen to me. I feel like I lost a few months of my life to researching the AN, and as you have probably worked out, this forum was a life saver. I emailed many people out of the blue because they had some experience that i was interested in. I always got replies... warm, helpful, supportive. This forum was the single best thing to come out of all of this (and a few good friends i made on the CK forum).
Another thing that really impressed on me during the part of the "journey" before surgery was that in some ways i was really fortunate, lucky... that i did not have cancer (some of the stories in the guest book i read while waiting for radiation consultations brought me to tears); that it was me who had the tumor and not my baby or someone else i deeply loved; that the internet and this forum were here to inform and guide me; that i had access to the health care i would need; that i had a supportive job, husband, and family to help me through whatever i would face; that i had a baby which provided me the strength and inspiration to face whatever i had to; that i caught the AN before it was worse/bigger (and mine was not really small either), that ....... ok, as you can see i am a bit philosophical at the moment. Like i have said though, even with the issues i have post surgery, i am just so happy to have this thing behind me and moving on with my life, one day at a time. I don't think i could have done the W&W, but then again i was advised to deal with it sooner rather than later. Everyone is different.
I guess all i am saying is that as scary as this might be right now, good things will come from it if you look for them. Some of the stories shared with me on this site were terrifying, some inspiring. After surgery i had cards and prayers (and i am not religious, but appreciate the thoughts) coming from everywhere... strangers, friends old and new, family i have never met or barely know. It's quite amazing.
Enjoy all that great skiing. I will look up Young and see where it is... it does not sound familiar but i am sure i have been close to there at some point. I am sure it is beautiful country. Sigh....
And yes, i have a young family in that my babe is 17months. I am 39 and still hoping for another baby...now that i have surgery behind me, i can go on with life!
Keep in touch and stay positive.
Trish