hello! another new person here with a million ?'s

[Keri]

Hi,
I was diagnosed two weeks ago. When I met with my ENT, he at first said, 'AN's are slow growing and you may just be in watch and wait.' I originally thought, "no big deal; i can live with that; get me a hearing aid and i'll be fine!" Now I've learned things just aren't that simple! Although this is my first post, I have benefited over the last two weeks reading your advice.

So, here's my story - my AN is 15 x 10 x 8mm. My hearing (left) is at 50%. I have a few balance issues - nothing major. Definitely feel the 'full head' on the left and a 'high pitched' noise (though not loud). Sometimes, especially when I'm tired, my head just feels 'weird.' I'm 48 years old and in good health.

From reading info and talking to my doctor, I'm inclined towards surgery (translab) even though the thought of totally losing my hearing on my left is a bummer (I'm a musician and the hearing aspect of this is the worst). I've read from these posts that many are happy with radiation, but it seems like after radiation, they still have to do surgery down the road anyway? Or that sometimes your hearing gets worse anyway?... So I guess I'd rather get it over with and get it out. My doctor said that the translab would be better for preservation of the facial nerve (I'd rather have the hearing...) but the way that mine is presenting, that with the other two types of surgeries, my hearing would almost certainly be lost anyway. So, I've about resigned myself to SSD. Which leads me to questions about BAHA....

I've read some of the BAHA posts - is the hearing quality clear sounding? What about in relation to the other types of hearing aids (the one that takes the sound and transfers it to your other ear)? With BAHA's, are there any limitations on running/sports, etc ? Also, when I've read posts on BAHA's, they seem to be more related to voice, and listening to people talk. How does music sound? I'm a pianist at my church, but am kind of 'directing' the rest of the group of instrumentalists, who will be on my deaf side.  I'm hoping that the BAHA will help with all that. (I know the BAHA will be down the road - I haven't even had my surgery yet).

Regarding running - I just did my first marathon in October! I was slow and it was tough, but I finished. Now (this sounds crazy) I feel like I should do another one before surgery (which will be January probably) because I'm afraid after surgery / recovery I'll be starting at ground zero with running again and will lose my fitness level. Or, do I sign up for a spring marathon to give me something to plan for, work for, hope for to aid in recovery?

Well, thank you for your patience in reading all this. And thank you for advice and sharing that I've read from these posts starting two weeks ago when I first heard the words 'acoustic neuroma.' Y'all are a great, supportive bunch and I look forward to talking more as we all continue to deal with these issues.

Keri

[macintosh]

Hello Keri--

Just to speak to the question of needing surgery after radiation: This is actually quite rare. Failed radiation for ANs is generally less than 5%. Sometimes hearing does decline afterwards, but the stats on that get murky. I think it is being pretty clearly established that fractionated radiation--i.e., multiple sessions--does a better job of hearing preservation than the old one-shot approach.

I had radiation nearly two years ago for an AN slightly smaller than yours. I went back to work the next day, and things have been pretty normal ever since. One good site with plenty of info is

http://www.acousticneuroma.neurosurgery.pitt.edu/

although I don't think they do FSR. Others will surely chime in with more sites with other perspectives. If you tell us where you're located, someone will be able to give advice on resources in your area.

Good luck with your research,

Mac

[Sue Vogel]

HI Keri, Welcome to our exclusive club though I'm sure we all wish you did not have to join.  You are among friends here.  Never be afraid to ask questions.

You already sound very rational about your choices and the effects from them.  Many symptoms, mine included, were similar to yours.  I would add some serious vascular tinnitus for the past four years.  That does not go away after surgery, but I am so accustomed to this that I hardly notice.  My preference WAS the presevation of the facial nerve rather than trying to preserve hearing in an ear that was already at least 50% disfunctional.   Each of us have/had goals for surgery that promoted our personal and professional needs.  Since you already know that your hearing is damaged, the facial nerve preservation is very worthy of prioritizing.  There are many ANers who have suffered facial nerve problems and can advise you from the other side.  The thing that is heartwarming is the positiveness and the smiles you can sense behind those posts.  Things do get better as most everyone suggests.

I'm not too serious about a BAHA just yet.  (It would cause some problems under my bike helmet, but I wouldn't have to wear it for riding.)  My surgeon just explained to me that BAHA is great for helping you hear sounds that you might miss coming from the "dark side."  What it does not do is help your brain to interpret exactly WHERE the sounds are coming from.  It just helps you to hear them better than you would without the BAHA.  It sounds advantageous depending on your needs. 

I play piano as well and had some problems in the first couple of weeks with my SSD.  My baby grand sounded out of tune in the high pitches.  It was about a quarter to a half note off.  But then when I sat down again at four weeks, the sound cleared up in my good ear and the baby grand sounds fine.  It is a little different that hearing with two ears (one half deaf.) The more I play, the better the piano sounds to me.  Don't worry about this one just yet. 

Surgery sounds scary no matter which method you choose.  I can only speak for Translab, but it really was not as bad as I expected it might be.  I bounced back and healed (on the outside) quickly.  It sounds like many, many others do also.  Every day I read the forum and take comfort in hearing from voices of experience and compassion.  I joined the day after my diagnosis.  I was immediately hooked for support when I read a post from Marci and sensed her positive outlook that mirrored my attitude.  I figured if she could do it with the grace of a woman, the stamina of an athlete, and the determination of a leader - then I knew I could do the same.  It's working for me, and it appears to be working for many, many others.  (I think Marci runs.  I'm a cyclist - mostly tandem.)   The forum is full of cheerleaders, and they will be there for you.   You go girl.  Run for the roses.
SUE

[Omaschwannoma]

Hi Keri,

Don't worry too much about how long it will take you get back to where you are now with fitness levels.  Sure you will have to start from the beginning, but it won't take that long before you are up to speed with running.  

I have never been a jogger/runner and have just begun to run 3 miles outdoors without difficulty and fatigue.  My only mode of fitness before my first surgery was Ashtanga Yoga and Vinyasa.  It took approximately 6 months to get back to my strong practice of Yoga; unfortunately, I was not able to stay at the level even after my second surgery.  I now adjust my Yoga to how I am feeling that day and this is fine for me.  BTW I am 52 years old!  

I feel hopeful that you will be able to get back to where you are today with your fitness.  There are others here that have done marathons, LADavid comes to mind, as he just finished a marathon with his daughter!  

[Sue]

Hi Keri, and welcome to the Forum.

It sounds like you are researching your options and that is a good thing.  Take your time, because you do have a small tumor and you have time to select the right treatment for you. The problem with all of this whole AN thing, is that there is no way to judge what every person's outcome will be.  Some people go through the whole thing with flying colors and have very little residual effects.  Some people have every complication under the sun.  There will be something that you will lose.  Guaranteed.  Some hearing, or all the hearing in your AN ear, of course.  Tinnitus is a very common problem with AN's.  One thing I would recommend is to read this article about your balance system.  I wish I'd read it at the beginning of my AN journey.  It really explains nicely how our balance system works and what happens to us when something gets out of whack.  You probably have things going on that you didn't realize were connected to your balance, and it's nice to know why these things are happening to you.    http://www.hearinglosshelp.com/articles/balancesystem.htm

We have had several musically talented people on here who have managed just fine after their treatments.  I know the same will be said of you!  I can only encourage you to re-think your position on facial paralysis, as anyone who has it would certainly not wish it on anyone.  There can be a lot of problems with that, including eye issues. 

I wish you all the best and we are sorry you are here, but welcome you into the fold. 

Sue in Vancouver USA

[texsooner]

Hi Keri, welcome aboard. Sounds like we have a bit in common as I'm your age and I'm a runner(pre and post op). My AN was 3.5 cm and didn't have much of a choice but to have it surgically removed....I think if mine had been smaller I would still have opted for surgery.

Regarding running, you should be able to get back to this(You can look back at a few of my posts regarding running). Everyone is different, but I can tell you about my recovery. I was lucky and had a very successful AN removal with a little facial weakness, dry eye and the expected SSD. I was determined to get back physically so I wouldn't lose my fitness level(same as your thinking). Within a week post op, I was walking a couple of miles a day. Then at about 3 weeks I began to jog a little. At about 5 weeks, I was back to running 5 to 6 miles 3 days a week. I've done half-marathons, and I'm training to do another one in January. That's impressive that you've done a full marathon(that's my goal when I turn 50).

I have to admit that I'm not running quite as fast as I was last year at this time, but I still feel like I'm doing pretty well to be active. You should be able to do the same. If you are also determined to run,  I would try to register for a run that is at least 3 months after your surgery. I always like having a goal to shoot for and it might give you motivation to do the same. Most marathons have a half-marathon option, so you might want to consider that too.

Sounds like you have a great attitude...that's half the battle. Keep it up.

Patrick

[Jim Scott]

Hi, Keri - and welcome to our site and the forums. 

An acoustic neuroma diagnosis is no fun and obviously presents you with a lot of tough decisions.  To your credit, you seem to have done some research and have basically decided not to 'watch-and-wait' (observe) but to undergo surgery, although radiation is still a viable option for you.  I have to agree with Macintosh that 'failed' radiation is somewhat rare but as Sue ('vogstar5') mentioned in her post, I would not be too casual about 'trading' hearing preservation for facial paralysis, even if that were possible.  While you clearly have good reason to desire to retain your hearing, facial paralysis is equally - if not more - problematic.  Many AN surgery patients function just fine with unilateral hearing loss but the Bone Anchored Hearing Aid can be a great asset in regaining a semblance of 'normal' hearing.  I choose not to employ a hearing aid and have minimal problems with my SSD (Single-Sided Deafness) but I certainly support those who use a BAHA or other aid.  It's a personal choice.

Although running even a half-marathon would probably kill me I admire those who enjoy such activity.  From a non-runners vantage point, I see nothing wrong with getting in good shape prior to your surgery and if that includes running a marathon, go for it.  However, having a spring goal for your next marathon is probably not a bad idea.  Again, this is a personal choice.

You seem to have a handle on your AN situation and I think you'll do fine.  Please feel free to ask, comment or whatever is appropriate, at any time.  You're among friends, here. 

Jim

[RosemaryL]

Keri:

I too am impressed by the marathon running.  I can't advise you on that, but I have some thoughts on the music issue.  I am deaf on my right side, but the hearing is even better than it used to be (before surgery) on my left side.  Hearing is a problem in a noisy environment, and it is difficult to hear a soft voice on my right side even in a non-noisy environment.  But if your concern is hearing the other instrumentalists when you play in church (generally a quieter environment), I think you may not have problems unless they are playing very softly.  My piano teacher sits on my right side and I can hear him fine (even when I am playing) when there are no noisy machines running. 

And, if you do need to, you might look at rearranging who sits/stands where in your group so they are on your hearing side.  Even pianos can be moved.

Best of luck.
Rosemary

[MAlegant]

Hi Keri and welcome,
I didn't lose my hearing after surgery but I am a runner as well, though my longest one-time-ever distance is a half marathon.  After surgery I of course started out walking. Once I could walk my short running loop (at about 3 weeks post-op) I ran my first tentative steps.  Kept adding on a bit at a time and by 5 weeks or so was running pretty much the same puny distance as before.  Now at 4 months I am in better shape than before surgery.  Oh, and regarding your other point, I increased my training the two weeks or so before surgery.  I figured it was the best thing I could do for myself.
Best wishes,
Marci

[Debbi]

Welcome, Keri-

I can't add a whole lot to what the other folks have said other than to say that each person has to decide for themselves whether the SSD is "livablle" or not.  I'm almost 7  months post op and am proabably going to get fitted for a TransEAr after the holidays.  I'm not up for another surgery (no matter how minor!) involving my head so TransEar is probably the best option for me right now.  When I am not in big groups or noisy environments, the SSD doesn't bother me.  I think the only thing I'd be looking for with a TransEar is the ability to hear someone to my right speak when in a crowded or noisy enviroment. 

Glad you found this forum, Keri - it's been such a blessing to me in this journey!

Debbi

[Jeanlea]

Welcome Keri,

It's good that you are a runner if you have surgery.  Being in good shape before surgery helps with the recovery.  That's what my anesthesologist (sp) told me before my surgery.  I was a walker before surgery.  Three days before surgery I was in a 5K run/walk race.  I made it my goal to run it the next year and I did.  Could have started running sooner, but it was snowy and winter and I wasn't highly motivated.  lol  Since my surgery I have run a few more 5Ks and a half-marathon.  In short, the AN hasn't stopped me from becoming a runner. 
I have SSD and have chosen to use a TransEar hearing device.  I like the fact that it can be put in my ear and taken out as I need it.

Good luck in your research.

Jean

[JerseyGirl2]

Hi, Keri,

You've gotten lots of good advice and suggestions from those who've responded to your initial post. I have just a couple of comments to add.

When I had my translab surgery last January, another patient -- a man in his 30s -- was also having AN surgery and he told us that he had run a marathon a couple of weeks prior to surgery. He was in great shape and recovered really quickly (I'm not saying that his good physical condition was the reason, but I imagine it helped). He was carrying his own tray in the hospital cafeteria within a day or so of release from the hospital, which I thought was pretty impressive. At that point I was walking over to the cafeteria without any problem .... but I let my husband carry the tray. And I recall that he was released by his doctors a few days earlier than expected. Obviously, running a marathon before surgery won't guarantee an amazing outcome, but I would say go for it if you feel like it.

Also wanted to comment on Jean's statement that she likes "the fact that it [trans-Ear] can be put in my ear and taken out as I need it." I have a BAHA (the Intenso model), and it can also be easily removed and inserted when needed. The titanium abutment is permanently attached to your head, but please let me dispel any notions you may have that we BAHA wearers are running around with protruding screws, a la Frankenstein! You can't see the abutment --- really! I wear my hair fairly short and have no problem whatsoever concealing the processor (and the Intenso is a good bit larger than the Divino model); the processors come in a variety of colors and the brown one is a great match with my hair color. I've worn mine since June and it is completely second nature to me now -- I think of it as my third contact lens. I have found it to be a big help, and while it doesn't resolve the problem of noisy environments and big crowds, it does make things better. I think that each person will figure out for himself/herself which is the best solution: TransEar, BAHA, or adaptation to SSD with neither device. They are all certainly valid approaches.

Best wishes as you continue your research and make your decisions.

Catherine (JerseyGirl2)

[wendysig]

Hi Keri,
I see the welcome wagon is out in full force and everyone  has already offered you a lot of really good advice.  I don't really have anything new to add except to say that I am sorry you need to be here, but  welcome to our group.  I'm glad this forum has already been of help to you and am sure it will continue to be.  I can't comment on the BAHA issue too much since I don't have mine yet (I'm scheduled for that surgery January 5) except to say that I am excited at the prospect of having one.  From what I understand the clarity is quite good except in a very noisy environment, although it is not quite the same as natural hearing and takes some time to adjust to. 

It sounds like you are seriously considering surgery, but don't be too surprised if you flip flop once or twice.   Everyone has their own reasons for making whichever treatment choice they make.  Once you've done your research, gotten consultations either in person or by phone or both  and weighed the pros and cons, you will probably find, as most of us have, that you will have a gut feeling of what the right choice is for you.

Wishing you luck iin the  treatment decision process,
Wendy

[LADavid]

Hi Keri
As you can see from this thread there are a few of us runners here -- several Half Marathoner's.  My surgery (a Translab) was a year ago.  I ran a 5K in the Spring and a Half this past October.  It took very little to get back to it.  Balance was the biggest issue.  I still can't sprint -- and I used to be good for a 60 year old.  But running was no issue when I eventually went back to it.

By the way, I've run one Marathon -- my first and last.  I truly admire those who can -- and still have the desire to run another.  My hat's off to you.

David

[Crazycat]

Keri,

I had surgery three years ago. I've been a runner for at least ten now. I'm 51 and I run four miles every night.

I had two surgeries: one for a shunt installation and another one for the tumor resection. I had hydrocephalus so bad I could barely stand up and I was in excellent shape at that time from trail running in the woods five miles a day; that is, up until my equilibrium totally failed. After the shunt installation, I was back jogging in two weeks. It was the tumor resection that took me out for a while: two weeks in the hospital, one week in rehab, and a lengthy recovery at home. I'm back to normal now, running four miles every night and weight training as well. Exercise works! I'm heading out now an it's 25 degrees out there!

I'm also a professional musician and have been earning a living playing bass guitar for over twenty years. While my left-side is totally deaf, I can still hear everything on my right-side. It's the very soft and subtle sounds that tend to get lost in the wash and are dependent on what direction your good ear is facing. I can wear an earplug in my good ear and still hear everything that's going-on.

From experience I can tell you this much: single-sided hearing will not be as much of an issue as the possible impairment of your left-side via cerebellar retraction or brain compression. In other words, if you are left-handed (and your AN is on your left-side) you could experience a notable impairment of dexterity in your left-hand i.e, penmanship and left-hand work on the keyboard. Believe it or not, you can get around the hearing loss on one side; it's the lack of dexterity in your hand (if it happens)
that will get your attention more than anything else. As a performing artist, having that dexterity is crucial. That is not to say that you hearing isn't crucial; it's just that you still have one good, healthy ear left to get you by. I have a friend, a drummer that I work with that is also a medical lab technologist. He lost one eye in an accident when he was 18. He works his butt off and is an excellent musician. He drives everywhere and never complains. He has a one hundred mile commute between home and work every day—not to mention the distance he puts in getting to his gigs at night. When you watch someone up close functioning at that level with an impairment like that, it really makes you wonder. I can't complain. What's worse, being blind in one eye or deaf in one ear?

In my case, I was a talented illustrator and had excellent penmanship. Not anymore! My left-hand dexterity on the guitar neck has also been compromised. I was both a six-string as well as a bass guitarist. Now I can only play bass; the reason being that bass is more of a rhythmic impetus coming from the right-hand while guitar is more dependent on left-hand vibrato and trilling. 
 
That comfort, that feeling I had whether I was wielding a pen or a guitar in my hand, is gone. While I can still function ( write and play bass) that comfort and smoothness I had has been robbed from me along with my hearing. But then, my growth was considerable at 5cm x 5cm or 50 millimeters!

  The good news is, in spite of all that, I'm very healthy and probably the best rock bassist on the scene around here.

Tonight though, I experienced something for the first time since my surgeries that concerns me. Earlier, while sitting at the computer, I felt an increase of pressure in my ears or head and an intense lightheadedness. There was also a marked intensification of the roaring, shrill and ever-present tinnitus accompanying that feeling.

While my Recent MRI (in October) showed no regrowth, I have a funny feeling that I'm not out of the woods with this.

My girlfriend is a church pianist/organist and choir director in Florida. I'm going to see her for two weeks this Sunday. I hope the flight down there doesn't leave me stone-deaf like the last time when I had a nasty head cold!

     Take care, Paul