Just diagnosed

[kimbo]

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.

 

[sgerrard]

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

[kimbo]

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

[Lamsue23]

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 

[kimbo]

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

[Kathleen5306]

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

[bills]

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.

[Kate B]

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

[Debbi]

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/

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

[Pooter]

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 .  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

[JulieW4]

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

[LADavid]

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

[kimbo]

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

[wendysig]

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

[Mickey]

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!