new to AN

[superrmaren]

hello all!

i just found out i have an acoustic neuroma on tuesday.  its is a daunting diagnosis.  i dont know anything about it other than what my ENT has told me and what i've read online.  i found this forum today and thought i'd post -- for answers and support!  i would be happy to hear anything from stories to advice that anyone has to offer.  i know surgery, results, etc are going to vary from person to person, but at this point, anything would be helpful so i know the range of things i may have to deal with.

i am nervous about not knowing.  i have a 4cm tumor, which i know is large.  i am also 23 years old, which i know is young. (i guess this thing as been growing in my head since i was a teenager?)  i am a singer and an actress, and i am currently directing a musical.  i guess the scariest part of the whole thing then, is not knowing how this is going to effect my life.  will i always be able to hear only 15% out of one of my ears?  will my balance and/or face be effected?  how about my throat???  will i be able to continue doing what i love?

i am not good at not knowing things -- i hate surprises and waiting!  and right now all i can do is wait until i hear from the specialist im going to see at johns hopkins.

tell me what you know?

thanks 
maren

[HeadCase2]

maren,
  Take a deep breath.  Everyone here knows first hand the affect of the discovery of their AN.  There are several people here on the forum that are young and have had large ANs that have been treated.  They will probably be posting to your note.
  John Hopkins is recognized as a top teaching hopital.  One of the things you'll hear here is that it's important to have treatment with DR who is very experienced treating ANs.  3 cm is often seen as the limit of potential treatment by radiation, so you'll probably be refered to a Neurosurgen, hopefully a skull base tumor team.  Check out there credentials, how many ANs they've treated, and how often, and they're results for complications.
  I know you're worried.  Know that many have gone through this.  We'll all be thinking about you here, and wishing you best of luck with treatment.
Regards,
Rob

[Joef]

Welcome! .. there is a great bunch here! .. ask us anything! I also had a 4cm .. the MRI looked like a easter egg in my head!! and I did feel very old for a while .. and I'm "almost" back to normal   . Where are you located? .. you do have to push yourself a little .. I'm sure it will be easier at your age (I'm 41) get and second option from these guys

http://www.houseearclinic.com/losangeles.htm

its were I had mine done .. they are the experts in AN surgery .. but there are several great places else where around the US, JH is one of them!  ...

are you having any of the AN type problems yet .. dizziness, ear fullness, and fatigue?

[Battyp]

maren unfortunately you are dealing with a lot of unknown variables.  The only one that isn't is that you need surgery.  It sounds like you are in excellent shape which will help you in your recovery.  Have comfort with your doctors and make sure they are well versed in treating AN's.  Know we are here to help get you through this tough time.  There are a few who have had 4CM AN's removed and can share with you their outcomes. 

[jacobs]

 Hi Maren,It's nice to know that you found this site so quickly.I didn't have access to the internet when I found out about my AN 4 months ago.I clearly remember the anxiety and stress of waiting for doctor's appointments,waiting for surgery etc.and all the while having to get on with daily life.
  I'm sure people are telling you to get as much information as possible from your doctors.I felt that knowledge prepared me the most for all of the possible outcomes.Before you know it you will be in the hospital recuperating and adjusting to life post AN.
  Take as much support and comfort from the people around you who love you and care about you.It does wonders for your state of mind.
Take lots of deep breaths...have you ever tried yoga or meditation? Having control over your breathing helps with the stress as well (just from my experience)
  I hope you get the answers that you're looking for,I have only been active on this website for a week or two and have found great support from everyone.Take care,Jacobs

 
 

[russ]

Hello Maren!

  Your dealing with a lot of 'potentials' with a tumor that large. Harsh realities with a 3.5 cm and above AN often include some of the losses you mention. You may or may not have further complication. My feeling is the remaining hearing will disappear if it's only 15% now but then, I'm not qualified to predict.
  Though JHH is an excellent facility; If this were my situation I would want another opinion and that by House Ear Institute in Los Angeles (  I see Joef posted the link. ). If they just receive copy of your MRI, they will telephone an opinion.
  You're pretty young to have an AN tumor at all, especially this large and I can imagine this will be a life altering event for you with much future challenge.
  I don't wish to frighten you, but that you might know the potential seriousness of the situation and that HEI does more surgeries with success, and has more experience with wide varieties of situations, than any facility in the USA.
  In ensuing years, please do pay very close attention to the other ear and promptly report any slight variation in hearing, tinnitus, or increased sense of being off balance. Maybe ask the Drs about NF-2 potentials as you are meeting one of the diagnostic criteria for it at being under 30 years with AN.
  Best wishes and stay positive, Maren! You'll need fortitude.

  Russ
 

[tryston]

Hi Maren,

I was also recently diagnosed. It's all very shocking indeed. However, relating to your post, if you know how to survive being a singer and actress and can direct a musical: you can SO handle this! You must have familiarity with producing, so this how you do it. 1) this is your priority project now 2) RESEARCH, research, research 3) Who is your best-scenario cast? 4) Decision 5) Make it work!

You may be Googling right now. I found these sites very helpful: http://www.anarchive.org, and this one has a great "list of questions" to ask your doctors: http://www.anworld.com. After you you get a sense of the technicalities, this website that we're on is absolutely the best resource!  You've got a lot going for you despite the size of your tumor and the need to act soon. You have access to one of the best medical facilities in the world, you are very young and it is 2006 and not 1966 - there has been dramatic progress in this type of surgery in a relatively short time.

Please let us know what symptoms are present, i.e, what made you see a specialist?

My thoughts are with you! Keep nosing around and posting, everyone needs to hear your story. This place rocks!

[Obita]

Hi Maren:

Welcome.  My AN had to come out also - it was just starting to touch the brainstem.

I read online for three straight days after my ENT called with the news.  By the time I met with the surgeons I pretty much knew all there was to know about ANs.  The initial shock had worn off and I had accepted the fact that I needed surgery. I trusted my surgeons (I had read somewhere to flat out ask them how many they had done or I never would have thought to ask).  They confidently replied that they had done over 500.  That really put me at ease and I was convinced they were the right guys for the job.

The wondering what "after" will be like was very hard.  I stressed myself out very bad thinking about that.  Bottom line:  there is no way to predict what side effects you may have so try (yeah, right) not to think about it too much.  What you can do is find the best doctors for the job so you have the best possible outcome.

Good luck to you, Kathy

ps:  the people on this forum are not doctors but they are experts!!

[chrissmom]

Maren,
 I'm Chrissmom.  Chris is a 22 yr. old college student at Penn State.  He was just diagnosed with a 5 cm AN.  We know exactly how you feel and the shock and worry  that overcomes you.  The people on this forum are your best resource.  They have been there and they know what you are going thru.  It seems that there are many young people like you and Chris in the same boat.  Christopher's surgery is next Thursday.  Chris had absolutely no symptoms until he lost his hearing and balance.  It all seemed so sudden.  We at first thought he was just being a goofy kid....little did we know.  We'll let you know how things are progressing.

[superrmaren]

thanks for your replies.
i have a little more courage now. (i think!)
the worst part is not knowing what'll happen after the surgery -- but with the list of questions on one site and knowing how to "pick" my doctor, i fell a little more confident about the pre-surgery part.
my next question is :: how big of a deal is this??  how long did you all stay in the hospital?
what was your recovery time?  how was it? 
what is the post-surgery AN life everyone is talking about?  have you noticed dramatic changes??
 
p.s. chrissmom -- good luck on thursday!! tell him i said hi!

maren

[superrmaren]

oh, by the way, i have hearing problems like crazy -- and i thought i was just not the most graceful person in the world, but my balance probably is effected, too!

m

[Jeanlea]

Supermaren,

I can tell you about my experience.  Again everyone's is different.  I was in the hospital for 9 days.  When they saw I could walk well enough on my own they let me go instead of sending me to the rehab floor.  I went for vestibular therapy when I came home.  Ended up in the hospital again after 2 weeks at home with a blood clot, but I haven't heard of anyone else with that problem.  I do have facial paralysis and numbness that took some getting used to.  Spent a lot of time at the eye doctor's.  Other than that recovery went fine.  I was back at work part time after 8 weeks and back full time after 10 weeks.  You will need to rest after your surgery.  After all, it is brain surgery.   

[ppearl214]

Hi Maren and welcome. Just know you are NOT alone. We are here for you!  I cannot chime in with anything different than what others here have already shared with you, but know that we got huggles and warm wishes for you and are here with our "good" ears and shoulders if you need it.

Hang in there Maren.  we're going to help you get through this as best as we can!

Phyllis

[Lisa Peele]

Maren, I just sent you a personal message as well.  I had a 4.3 X 3.3 cm tumor removed almost 2 years ago and am living a full, happy, productive life with no major residual issues.  You would never know I had such a large tumor!  I am expecting my 5th child (a little girl) in August and am enjoying LIFE as I knew it pre-surgery.

If you have been searching this site, you may have read one or more of my posts.  I was 34 when I was diagnosed...with hearing loss in my right ear as my only real symptom.  I had the translab procedure just over 2 weeks after I was diagnosed.  My surgery lasted 3 1/2 hours and I was in ICU for one day and a regular room for 3 days after that (tumor completely removed with no complications).  Please look up my profile and scroll down to read my previous posts to get more of the details of my story.  I am willing to help in any way I can!

My husband searched the internet before my surgery and was really concerned that I would never have a normal life after surgery.  We also did not have a choice--it had to come out--and quickly.  But people do make it through this well--even those with large tumors.  Many people move on if they don't need continued support, so you do not hear much from the ones who are doing well.  But we are out here !!

I'm wishing you only the best!  Let me know what I can do to help.

[cookiesecond]

Maren,
As everybody has told you, each AN journey is different. I was admitted the day before my surgery to start IV antibiotic therapy. My surgery was 8 hours long. My doctor had predicted 5 1/2 but the tumor was wrapped around my facial nerve. They had to slowly pick it off. I do not have any facial damage!!
I had the translab approach so I did lose the remaining hearing but I had lost most of it before the surgery.I was in the hospital 6 days.My doctors were great and that means alot. You really need to feel good about the team you choose. (I had surgery at Duke with Drs Cunningham, McElveen and Fukushima.) Next a good support team is very important.You need to surround yourself with family and friends that will take care of you and encourage you. Having someone to advocate for you while you are in the hospital is great.They can help monitor the meds they have you on and speak up for you if you don't feel like it.
When you get home you will need someone for awhile.The more you can get up and move around the better.
I stocked up on easy to fix foods, soups, juices etc. I used a shower chair and a hand held shower head and they worked great.A shower at home felt really good.
My only lingering issue is balance. I am A LOT better but I still feel a little off balance at times. I have just started vestibular therapy and my therapist is very optimistic.
This is a great place for encouragement and information, feel free to ask questions and vent  any time.
I will keep you in my thoughts and prayers.
Take care,
Lynn