Newly Dx with Acoustic Neuroma

[Dan T]

As all of you can imagine, I have several questions.  The MRI I had this past Monday revealed a 5mm AN tumor.  Today I spoke with a neurologist, otolaryngologist at the Cleveland Clinic.  I understand I have three choices in treatment, 1st is to sit back and watch, 2ND radiation, 3rd surgery. My symptoms have gotten progressively worst since this past April.  The room spins all day everyday now. I have been taking antivert which seems to work for about an hour before the room begins spinning again. The thought of sitting back and watching doesn't seem to be the answer at this point.  I was told radiation can lead to permanent loss of balance, the tumor could come back and cause problems for surgery at a later date.  I was also told surgery could lead to permanent loss of hearing in the effected ear, but with aggressive therapy my balance would correct.  Reading through forum, I did not see anyone with complants of hearing loss after surgery. Do I lose my balance or lose my hearing? Also, is there one neurologist preferred over others.  The location is no matter.  One last thing, I am 34 years old. Thank you for your time, I look forward to reading feed back.   

[Patti UT]

Dan,
  You are right about the 3 choices.  The surgical choice also has 3 approaches to chose from.   It sound like you have already lost your balance.  Trying to preserve your hearing may not be the best choice if you are having such severe vertigo.  I have suffered with severe balance issues since my Middle Fossa surgery 5 yrs ago. My brain just never compensated.  Middle fosa was done in order to preserve my hearing.  I am currently faced with a recurrant tumor and they want to do Translab approach this time, which will wipe out my remaining hearing in that ear.  The reasoning is that to preserve hearing (and I might add, measurable is far different than serviceable) they leave  the cochlear nerve  which is attached to the vestibular nerve which is  pretty much always taken out to get the tumor out.   But when they cut it out, they leave a small piece of it where it is attached to the cochlear.  The theory is that the small piece has caused my brain to "think" it still has that nerve, therefore not compensating for the loss of the nerve.  For the recurrant tumor, they want to do translab approach which will wipe out the tiny bit of hearing that was preserved, thus taking out the cochlear nerve and along with it the tiny piece of remaining vestibular which in theory, will remove the "phantom" nerve my brain thinks it still has and allow it to finally compensate.  makes sense,   My observation from Translab patients I have met personally and read post from on here, It seems the Translab patients sometimes have bad balance issues before surgery but not after.  For me, the presurgery balance issues were so minor I didn't even realize I was having them until I looked back and saw where what I thought was just clumsiness was probably balance issues form the tumor.  The severe issues came after surgery.  Facing surgery again has been really hard on me so I looked very closely at radiation this time to avoid it.  But as you have already been told, And I was told by the radiosurgeon I met with,  the radiation will NOT help the balance, and could even make it worse.  They basically said I needed to chose between balance and hearing.  (gee, great choices, which one of my senses do I want to let go of....NONE )  Based on that I knew my only option to hopefully improve my balance was the Translab surgery.  My continued falls and injuries just have to stop.  But the surgery is a touch one.
  Good luck with the decision making process.  I There is so much information to digest.  Your tumor is small (my new one is the same size as yours) so you have some time to research.  You will find lots of good information on this forum.  Take a deep breath and learn all you can. Ultimately, you have to go with your gut as to what will be best for you.
  I'm sorry you have to join the AN club, but you will feel welcome, be able to get questions answered, stuff the doctors rarely go over with you. The people are great on here.

Take Care
Patti UT

[suboo73]

Hi Dan,

Welcome to the Forum, Dan - but so sorry you had to join this crazy club...!
You will meet the most FANTASTIC group of folks here - so don't be afraid to keep asking questions. 
Then take a break when you need to - sometimes it is information overload.

Your AN sounds small, but mighty. It is my understanding with translab surgery, you will be single-side deaf (SSD) due to the surgical approach; but this would not necessarily be true with the other two approaches. 

I have been here just about one year, as is my sister.  But i am still researching.
Have you heard about House Institute in CA?  You can get a second opinion from them.
It is most important that your doctors have A LOT of experience with ANs and AN treatment. Don't be afraid to ask them about it!
And, if you want, take someone along to your appointments so they can make notes, etc.  This is just my opinion, but sometimes i miss the details and can't remember everything later.   

The AN journey is quite a trip, as you are finding out. 
But know that you are among friends here and we will support you along the way.

Sincerely,
Sue

[another NY postie]

Hi, Dan and welcome.  Sorry you have to deal with this and I know exactly how your feeling...my AN is 5 mm too and I was diagnosed on June 9th - at the time I had never heard of this.  I am now scheduled for middle fosa surgery next week.  I spent the last three months exhaustively researching this, seeing many neurologists/neurontologists.  Be aware that you will encouter many, many different opinions both from the doctors and from people, based on their experiences.  Having a small one does give us ALL the choices, but for me, it added a burden because I was so scared of making the wrong choice.  And yes, all of this is a personal choice.  There are no right answers, unfortunately, and everyone seems to come out of surgery and radiation having different issues or none at all.  Talk to as many people as you can - this forum has been UNBELIEVABLE to me.  People have been so generous with their time and it has helped tremendously.  I saw 8 doctors total which sounds like a lot but each contributed something to my knowledge and understanding of this.  I ultimately concluded, for myself, that every single choice held a good amount of risk/gamble - ie no guarantees for anything - and I found peace in my decision.  I have to say that when my first appt said that I might have to choose between hearing and facial nerve, it was like he was speaking another language.  What was he talking about?  It sounded like Sophie's choice?  Subsequant doctors followed along with hearing is great to preserve, but the facial nerve is the most important.  I now agree with this but it took me a long time to understand this and feel it in my heart.  Many people of site have ended up SSD and they are living full lives so it is not the worst thing. 

In terms of a small tumor, mine is also small, but mighty.  I have mostly hearing issues.  Try to contact amye on this site.  She has a 4 mm on her left (mine is right) and she has had MAJOR balance issues.  She can give you lots of good information on dealing with that.  She is watch and wait rght now, her hearing is great and she has been able to manage it.  I think the postion of the tumor decides what symptoms to torture us with!

Hang in there, take your time on finding out all about this and on making your decision.  Talk to as many as you can....you're going to be fine!

Good luck!
Cheryl

[Patti UT]

Dan

I'd like to add something I failed to in my first post.  Like Cheryl said,  facial nerve preservation is VERY important.  I am told with the tumor being so small, the chance of damage to the facial nerve is very minimal, but it is always a risk.  Although I will go through Translab this time, and let the remainder of my haring go in able to hopefully improve the balance,  I am VERY concerned about the facial nerve.  I had temporary facial paralysis for a few months after the middle fossa, but all the facial function did come back.  I am more concerned with it this go round.

again,  do your research, and when it comes time to go for treatment, you will make the best choice for you.

Strange to think we are out "shopping" for brain surgery options 

Patti UT

[cindyj]

Hi, Dan, welcome!  As with so many here, I know just what you're going through...many years prior to my diagnosis, I had severe bouts of vertigo - lived on Antivert for quite some time.  My ENT said I really needed to get off of it, so I did.  After many more months of mild to severe vertigo, I finally learned to live with - just toughed it out...what I know now is that I was not so tough, my brain finally just compensated for the compromised nerve on my AN side.  So, there is hope that your room spinning will stop once your brain compensates...for the most part, anyway

The choices you have are overwhelming, but you've found a great place to be to help you through it...along with your docs, of course   But, ultimately, it is your decision to make - the docs won't make it for you, especially with one as small as yours.  For me, I eventually decided to go with the Translab because of all the trouble I had with vertigo - I did not want any of that vestibular nerve left to confuse my brain.  I did, of course, sacrifice my hearing (which was as near perfect as possible), but it has not been as bad as one might think.

Well, we all do wish you the best and hope you'll stick around with us and keep us posted on your journey,

Cindy

[Kaybo]

Dan~
Welcome to our happy, little group - wish you weren't here, but glad you found us!  I could be wrong, but I think that there is a really good facility/doctors in Ohio - CherylR help me out here.  There are many great Dr.'s thru out the country - House being one of those choices, but you may have the best thing in your own backyard and you wouldn't have to travel!  I have been SSD for 13 years and have facial paralysis (had surgery before many medical advances were made) and I would take the SSD ANY day!!  The facial stuff certainly isn't unbearable, but if I could choose, I'd pick the loss of hearing in one ear!  Some people call it that "gut" feeling, I personally think it is the leading of the Holy Spirit, but whatever it is or whatever you believe, you WILL KNOW when you hit on the right Dr. and treatment choice.  We are here for you...to answer your questions, hold your hand or listen you you vent!

Peace in your journey,
K

[Kathy M]

Hi Dan,

I don't have much else to add to what others have said here...my AN was removed in January '09 and it was large, so my options for treatment were much fewer than yours.  I believe there are a few folks around here who have had their treatments / surgeries at the Cleveland Clinic.  I live in southern Ohio and had a fabulous neurosurgeon and neurotologist in Cincinnati take care of me (chosen after 3 consultations and many hours of research).

Others will continue to chime in.  Feel free to send me a personal message through this site if you ever want to talk - I'd be happy to call you, as would many folks here!!!  Take your time, research a lot, consult with as many medical professionals as you feel you need to in order to make your decisions.  As people told me here when I was first diagnosed, once you do your research and begin having consultations, you will soon know what is best for you and your situation.  Everyone is different and ANs are tricky little devils - and this is a scary thing.  You are in very good company and we are ready to help in any way possible!!! 

Kathy

[epc1970]

Welcome Dan!
I agree 100% with Kay that you will know when you have found the Dr and the method of treatment that is the one for YOU! With my tumor being so large I did not have to agonize over what type of treatment as surgery was my only option but I did go thru 3 surgeons before I found the one that I just instantly knew was the one I would trust my brain to. No matter what you choose to do, everyone's outcome is different....I had no balance issues, temporary facial issues and still have some of my hearing an my tumor side. My best advice is to do your homework and choose a Dr that has extensive AN expirence as well as decide what are your goals/priorities of treatment eg do you just want the tumor out? Is the facial nerve most important? Is hearing preservation most important? Are you adverse to surgery? etc  It is overwhelming but you will figure it all out. The good thing is that you have time to make a choice as AN's are most often slow growing and yours is still small. Good Luck!
Erin

[Cheryl R]

I'm afraid that I'm not the Ohio best judge as I am the Univ of Iowa supporter which is a bit of a ways from Ohio.      That I know as a good friend is on west edge of Cleveland and is a 14 hr drive when she comes back here to central Iowa to her relatives.       Kathy M,Marci,Pembo and know others are the Ohio ANers.        Cinncinnati and Cleveland have both been used.               
In time with the small tumor, you may adjust to the balance problems.  There would be some adjustment after surgery also.           In the case of surgery and there does end up being a facial issue,it would most likely be of the temporary type.         Everyone varies in how you handle the SSD.                        Hard decision of choice.                               I can say that Univ of Iowa does mid fossa frequently and can save the hearing in many cases.                                 Cheryl R

[kmancini]

Hi.  Welcome.  I had surgery to remove my tumor.  I went to University hospital in Cleveland.  My doctors were great.  They saved my hearing but had to close my ear up.  So I am SSD.  I have had balance issues.  I am getting better.  I would much rather loose my hearing than my balance.  You can still get around with no hearing.  They have things to help with that.  Like the BAHA.  Good Luck.

Karen

[Sue]

Hi Dan,

I had Gamma Knife (GK) for my middle sized AN.  Over the course of time my balance compensated without me being aware of it.  I had some issues at the time of diagnosis and I had some balance problems after my treatment, but that has pretty much cleared up.  I have never heard that radiation can cause permanent balance problems.  You also should talk to a radiation specialist or contact the CK site...www.cyberknife.com   It's always nice to get their opinion too.  

It's all about location.  Small AN's can be nasty little buggers if they are growing on just the right spot.  I didn't find out about mine until it got to be 2 cm, and some get to be 4 or bigger before it's found out.  One of the many weird things about AN's I guess.  The sad  truth is:  there is no way to predict the outcome of which ever treatment you choose.  You may have no trouble with surgery, or you may come away with some serious problems, such as headaches, or facial paralysis.  You may have no trouble with radiation, but may come away with some "wonkyhead" a.k.a. balance trouble, that may last for months.  That's because the radiation irritates (well, it's killing it, after all!) the tumor and the nerve.  You can have re-growth with surgery.  You can have re-growth with radiation.  The best thing is to try to get as much info as you can, and decide which seems like the best solution for you.  Get a balanced perspective of your choices.  We have been blessed with getting a skull based tumor that is not cancer, but it still is to be taken seriously and it takes some serious medicine to kill the darn thing.  And when they start mucking about inside heads and with nerves, it can be scary!!  Hang in there, ask questions, trust your own instinct  and you will be fine.  

Sue in Vancouver USA

[leapyrtwins]

Reading through forum, I did not see anyone with complants of hearing loss after surgery. Do I lose my balance or lose my hearing?

Dan -

I lost my hearing after surgery - so have many others here.  Lots of people adjust just fine to being SSD (single-sided deaf), but some of us go kicking & screaming 

I was a kicker and a screamer - figuratively, of course.  What I mean is I was a "bad" SSD person - it drove me crazy, made me miserable, etc. - I opted for a BAHA implant and am MUCH happier these days! 

Lots of surgery patients have balance issues post op - but the body does compensate and most of us actually have very good balance after a period of time.

My AN surgery was done by an excellent team (neurotologist/neurosurgeon) just outside of Chicago.   My neurotologist also does Gamma Knife.  If you are interested in more information, please PM or email me (my email address is in my profile).

I'd also like to suggest that you contact the ANA and ask for their informational brochures - they are a wonderful resource.

Best,

Jan

[Adrienne]

Dan,

Sorry you have to go through this.  We all know what it's like.  Wish it was only hearsay, but we all happen to have first hand experience! :-~

You've gotten good advice.  Confusing, but good.  LOL.  It's ALL confusing at this point.  Because your tumor is small, you will have all of the options open to you.  Mine was bigger and I had a few taken off of the 'recommended list' for me.  In some ways I hated it, in other ways I loved that it shortened my decision making process.  How could I ever live with myself if I chose the wrong thing?  Thankfully, after meeting my neurosurgeon I had complete faith in his expertise and no longer felt like I needed to struggle with what to do.

We had a conference here in Vancouver (Canada) last weekend, and my neurosurgeon and my ENT surgeon were guest speakers.  One of the repeated things they said was that they DO NOT like to operate whenever possible.  The emphasis was on Watching and Waiting whenever possible for the small guys.  In fact, they even gave a statistic to say that at around the 1.5 cm mark, they would start considering treatment options.  The reason for that was that unfortunately, people often get 'new' problems when treated (additional hearing loss, or complete loss, balance issues worsen, etc).  Having said that, yours is small but already causing you issues!  As many people before me have said, there are no guarantees to how you will come out of this.  A good neurosurgeon will be able to give you statistics and probabilities though, based on your specific tumor/location and the type of treatment you select.

What I wish for you is to meet a specialist that makes you feel at ease slightly (yes, it IS possible), where you know that you've chosen the right person.  People kept telling me to wait for that, and sure enough-it happened.  

It's not a fun journey, but things can be really good once you get to the other side.  I'm 3.5 months out from surgery and good as new (except for the fact that I'm on crutches for a sprained ankle from my soccer game on Sunday night....but hey-I figure that's a GOOD problem to have! LOL  It means I'm playing soccer again!  :-)

Good luck with your decisions.

Adrienne

[Jim Scott]

Hi, Dan and welcome. 

I'm sorry you have an AN diagnosis but I hope the folks on this forum can be of some help in directing you to the best option in your specific case.  As you can guess, there is no 'perfect' option for any AN patient. Both surgery and radiation have their downsides, although some AN patients who opt for one or the other have no problems afterward.  I underwent debulking surgery to pare down my almost-5 cm AN, cut off it's blood supply and render it amenable to radiation.  This approach was undertaken with the hope of avoiding facial paralysis.  My hearing was already gone in the affected ear, so hearing preservation was not an issue.  Long story short: the surgery (retosigmoid approach) went perfectly with no facial paralysis and no other post-op complications to speak of.  3 months later I underwent 26 FSR treatments, which were uneventful.  My last MRI showed tumor necrosis (cell death - the goal of radiation) and some shrinkage.  I'm basically symptom-free now, 3 years later.  I enjoyed a rapid recovery and have only gotten better over time. 

I relate all this as a form of encouragement and to illustrate the fact that not every AN patient has an unpleasant outcome to treatment.  My case is not an anomaly but of course, one person's experience, be it good or bad, is not a guarantee of another AN patient having an identical experience.  There are a host of variables involved with acoustic neuroma treatment, including the exact shape and location of the tumor and the skill of the doctor(s) that treat you, be it with surgery or radiation, or, in my case, both.  I had fabulous doctors.  Highly skilled, heavily experienced in treating acoustic neuromas and very compassionate and patient-focused.  I consider myself blessed with the outcome I experienced and I sincerely hope you'll have a similar outcome, no matter what path you take to address your AN.  This website, the forums and the good folks who post here are ready and eager to offer our information, advice and, most of all, our support to you, Dan.  We're not doctors and can't address strictly medical questions but, collectively, we have a ton of practical experience to offer and we look forward to sharing that with you.  Just ask. 

Jim