Just diagnosed yesterday

[JaneSR]

Hi,
I just got the news yesterday that the dizziness I've had the past year or so is due to a vestibular schwannoma (contrast MRI earlier this week).  Of course I've been searching the internet for info and I'm lucky enough to live in Baltimore where there are experts at Johns Hopkins.  I'm hoping to make an appointment with one of these a.s.a.p.  Feelings since the news yesterday range from shock:  a brain tumor?!?!!?!  to relief that it is benign.....to fear when I read about what is involved in surgery for this. 

One of the first things I need to do this week is to get a copy of the MRI report as all I know is that the doctor said the schwannoma was "small".  This is complicated by the fact that tomorrow I start 2 weeks working at the office of a sleepover camp about an hour from home. 

 I'm anxious to talk to the doctor because I'm training for my first half-marathon (Oct. 13) and I really hope that this can wait until after the race.  I'm raising money for the Leukemia/Lymphoma Society and I hope that I can enjoy the rest of my training and the big event itself.

I would REALLY appreciate any information that you can give me!
THANKS.

Help me find a cure for leukemia by visiting  http://www.active.com/donate/tntmd/tntmdJRice

[Dana]

Jane

Welcome to our club, "the one no one want to join," as is said often here.  Many people will respond to your post I'm sure.  "Small" can be anywhere from a few millimeters to 1.5 or so centimeters ... I think that's an accurate description.  1.5cm is about the size of the tip of your little finger.  Mine is 1.5cm by 1.6cm, considered on the large side of "Small." 

In addition to being small, almost all ANs (acoustic neuroma = vestibular schwannoma = vestibular neuroma) are very slow growing, like 1 or 2 mm a year.  (As with everything, there are a few people who've had faster growing ones).  This means you probably have lots of time to do the research you want before deciding how to proceed, AND it probably allows you to do the half marathon.  The caveat, of course, is if your symptoms start getting worse more quickly and affect your ability to do a half marathon.  (Now, that wouldn't be a problem in my case, because there's NO WAY I'd EVER be able to run a half marathon, with or without an AN !!! ;-)

There are three basic options you have (with lots of subcategories you'll learn about):  1) wait and watch 2) physical microsurgery or 3) radiation surgery (usually a one-shot outpatient procedure, but there are kinds that involve several outpatient radiation appointments).

And, finally, you've found a GREAT SUPPORT community, one which will provide lots of information sources and conversations, as well as lots of emotional support.  I recommend you join the ANA organization (I can't remember if you have to join in order to participate on the Forum, in which case you already belong!).  They'll send you any or all of the informative pamphlets they have that you want. 

So, take a deep breath, and gather information about your own AN - size, location, what nerves it might be pressing against, etc.  One thing I didn't know until this happened to me was that you can get the pictures from your MRI on a CD; mine included the software that allows you to open up the picture files .... allows it on a PC computer, that is.  (I was told it would work on a Mac also, but mine doesn't.)  There's lots to read online, including posts here.  Main thing is, you're not alone while dealing with this, and there are many both compassionate AND clear thinking folks here.  I have found it to be a godsend.

Take care.
Dana

[Sue]

Dana jumped in right ahead of me and mentioned what I wrote, but I'm going to leave this as is anyway!   

Hello JaneSR and welcome to the Forum.  Sorry you get to join our little club (yes we do say that often! I think of it as a different kind of "Club Med".), but you've found a good place and good people who are more than willing to offer advice and support.  My only advice is to make sure you get a balanced (no pun intended!) perspective on your options. Since it is in the small catagory you probably will have time to research and learn all that you want about Acoustic Neuroma and the various ways in which they are treated. These options include "watch and wait" where by your physician decides that you can chill out for 6 months or so and have another MRI to see how fast yours is growing. Or you can nuke that puppy via Gamma Knife, Cyberknife, Liniac and various other means of radiosurgery. That's what was recommended for me and I embraced that treatment fully.  Or, depending on where your particular AN is located and the troubles that you have incurred and the gut feeling that this is the way you want to go, maybe microsurgery is what you will decide on and then you have a few options as to how exactly that will be handled. That I am sorry to say I know very little about and would not be comfortable in going into detail on those procedures.  Just make sure your doctor is willing to discuss ALL these options with you.  Surgeons favor their specialty, of course, and might not be too inclined to send you down the road to another doctor.  You might have to talk to several doctors and get their opinions before you proceed with what feels right to you.  you also need to find a good team that has a lot of experience.  

Good luck to you and I hope your AN journey is resolved quickly and that you are on the road to recovery soon. It's not a road any of us though we'd travel, since most of us never have heard of this highway before, but most of us have navigated it pretty well.  

Sue in Vancouver WA USA

[Jim Scott]

Hi, Jane:

I'm sorry you've been diagnosed with an acoustic neuroma tumor but since you have, I'm glad you found this forum.

I can't really add much to the previous poster's comments but I'm certainly looking forward to reading about your progress as you educate yourself and, ultimately, decide how you'll address this medical problem.  Fortunately, it's a benign tumor.  Unfortunately, its located in a bad place and can impact the brainstem if left untreated.  By the way, running even a half-marathon is impressive and I expect that you can put off treatment for another two months if your AN is 'small', but only an experienced physician can make that call. 

Please let us know how your appointment at Johns Hopkins goes.   

Jim

[Omaschwannoma]

Hi Jane,

Quickly here as I must run, but do take a tape recorder with you on your first of a few doctor's visits so you don't have to stress about absorbing all he/she is saying to you.  Read over some of the info posted here so you can come up with questions you may have and bring them with you to your doctor.  Most everything has been said above me so all I want to tell you is relax as best you can for now, continue to aim for your marathon until someone says "Don't", stay in touch with us all and sorry for your being part of our group.

[Betsy]

Hi Jane,

I'm so sorry you have an AN, but I have to say good for you for still wanting to run in a marathon!  No matter what you decide in the future (wait & watch, radiation, or surgery), you'll be in great shape after all that training!  I do hope your doctors clear you to participate....it will help to have something else to focus on while you're learning about your options.

You're fortunate to live in an area that has a LOT of AN expertise, both at JH and UMMC.  I left Baltimore about 18 months before my AN was diagnosed.  Went back for a consult at UMMC and was surprised to see that the downtown streets are still torn up!

As you read through the old posts on this forum, you'll see that in many cases, we make our own decisions about what treatment (if any) to have.  It can be bewildering at first, and frustrating.  This forum can be a real lifeline whether you need advice, info or validation.  You're not alone.

Please post again and let us know how your visit to JH goes.

Betsy

[sgerrard]

Every case of AN is unique (don't you feel special? ), but my impression on this forum is that even large tumors with serious brain stem issues looming often take 8-10 weeks to get into treatment. I would be quite surprised if your AN turned out to demand treatment before Oct. 13.

I suspect the real issue for participation will be whether the dizziness you are experiencing interferes too much. I hope you run the half marathon - heck, I hope you win it! Training for it will provide a good activity to take your mind off of the AN, as you gather information and advice on what to do about it.

Best wishes, Steve

[McFlorida]

Hello Jane.  Sorry to hear about your AN.  I hope that you win the marathon as well.  Although it does bring up a question that I have been asking myself.  Prior to my symptoms and diagnosis, I was running 3 miles three or four days each week.  I stopped when I started getting the symptoms, concerned that I was blowing a gasket if you know what I mean.  But then when I was diagnosed with the AN, I picked up my activities again, but haven't started running again.  Because of the symptoms that have presented over the last few months, I was concerned that the nerve was getting sensitive, and increased cardio (like running 3 miles a day or so), might put more pressure on the nerve.  I have partial but still usable hearing in that ear.  My original ENT told me that I couldn't hurt it, but I do know that the tinnitus increases with activity.  I want to start running again.  I am curious how your doctor responds to your marathon.

[neal r. lyons]

Hi Jane, Neal here.  I just finished running, albeit a mile for the first time since my microsurgery on June 22, 2007.  I had a larger tumor and decided my best course was total removal.  As long as you have not been bothered by dizziness during your running I'd say go for it.  I was running on a fairly regular basis right up until surgery, but had had a few dizzy spells over the period of several months.

I found the MediFocus Guide on Acoustic Neuroma (medifocus.com)to be helpful in my initial and subsequent searching for treatment.   It's a synthesis of up to date info from well-respected medical journals(paraphrasing) Its primary goal is to educate patients and their families about treatment options.  You can view it online or in print or both as I did.  I think the cost was about 25 dollars.  It is updated every 4 months I believe.  The purchase price is for 1 year.
 

Welcome to the forum.   Try to maintain your patience during your inquiries to enable you to make an informative sound decision.
Don't hesitate to ask questions on this forum.  Few of us are doctors but we've certainly talked to alot of them, and there are many knowledgeable people on the forum  who are most helpful.  Best wishes to you and enjoy the run!  Neal

[Desilu]

Hi Jane,

Everyone has offered good adivce. I think one thing that was not mentioned, and I may be wrong is, that you will not die from this! Take your time and make an educated decision. We are all behind you 100% no matter which type of treatment you make (watch and wait, surgery, or radiation). We are one big family here trying to help each other through this stressful time. I personally chose surgery. If you would like more information about that, then please send me a personal email. I wish you the best on your AN journey.  Ann

[ixta]

Welcome to the club jane, I am 9 mos post surgery and did my first sprint triathlon. left AN.
I first tried to "run" if you can call it that about 4 months post op, and it was quite a merry go round.
I then jumpt into the pool, and the first few laps real dizzy, (flipturns and all)-after about 1,600 meters, the dizziness went away, I swim now on an average of 2k meters 3x week and run about 3 miles every 4-5 days, and will add biking in sometime soon.

the brain will need train to wireitself out, but balance issues to be expected, especially if they have to take out your whole vestibular hearing nerve.

ONe thing to note, it has taken the "butteflies" and nervousness away before competitions, I am in my own world now being half deaf, so it is "soothing" in a way, and you can tune out the cheering crowd etc. Of course if someone says, "GO IXTA~!", I can't hear them anyway so it's all cool.

I really feel swimming has helped me with my balance issues more than anything.