Lost with lots of questions

[R2]

I was just diagnosed with a 43mm tumor that is affecting my hearing in my right ear. I just had the talk with my doctor and he said:

the tumor is to big to just use radiation
The surgery of course has risks
He has done 600 of these surgeries
3 People have died during the surgery from stroke and that was during the first 300 surgeries

He said that there is a "possibility" the nerve that affect the muscles in the right side of my face? What does that mean? Am I slack jawed the rest of my life? Not being able to close my mouth or blink or wink?
Does the muscle control come back?

Also, I am a healthy 30 year old man. How long does it take to recover? When can I go back to work?

Of course I don't expect concrete answers to all my questions but I am feeling panicked.

If anyone has any information I'd love to hear back from them

Thanks. R-

[ppearl214]

Hi R and welcome. I hope we can help put your mind as some ease and answer some questions for you.

At 43mm (4.3cm), yes, it is typically too large for radiation/radiosurgery. The typical cut off size for radio-treatment is approx 3cm.  Many dr's are now performing on AN's a double process of "debulking" the tumor (basically, removing what they can but leaving a some residual to help prevent nerve damage), then following up the smaller remainder with radio-treatment.  I know of some on this site that has had this process (JimScott, where are you? ) who can provide better insight into it.

As we know, all medical procedures, in life, come with risks.  Please remember that this growth is benign and very treatable.  We know that, as with any medical treatment, outcomes (good and not-so-good) can occur, so, just a suggestion.... read this forum (I would do it in break ups as not to become too overwhelmed with the information).  We are here to support you and answer questions, based on our experiences, as best as we can.

I know many here will be happy to help you along with this new "journey" and we even toss in a bit of humor to help the cause.  Hang in there...we're here to help.

Again, welcome.
Phyl

[leapyrtwins]

R -

welcome to the world of ANs.  It's normal to feel scared, frightened, and yes, panicky.  Afterall, you've just been told that you need brain surgery.  But the good news is, you found this forum.  We're all here to help you in any way we can.

I'd like to recommend that you contact the ANA and ask them to send you a packet of information which will explain all about ANs and the treatment options available.  I found this information very helpful in spelling things out in layman's terms - not technical medical terms.

I'm really bad at metric conversions, but I'm thinking 43 mm is equal to 4.3 cms which is generally considered too large for radiation. 

Surgeries do have risks, and your doctor would be lax if he didn't inform you of those risks and the statistics related to them.

I think the nerve he was talking about is your facial nerve.  Your inner ear canal contains your hearing nerve, your balance nerve, and your facial nerve - and now, your AN.  Facial nerves can be damaged as the result of an AN and/or AN surgery.  The good news is that facial nerves, unlike hearing nerves, can regenerate themselves in time.

Most doctors say that recovery from AN surgery takes about 6 weeks, but a lot has to do with the patient; everyone is different.  In my case, I was back to work part-time 2 1/2 weeks post op and back to work full time 4 weeks post op.

Hope this helps answer some of your questions.  I'm sure others will be adding posts to mine.

Jan     

 

[sgerrard]

Hi R,

Well, 4+ cm is on the big side, so surgery is the way. Not sure about the hearing, but even if you lose it on one side, many people do well being SSD (single side deaf), and you can always get a BAHA, like lucky Jan just got, which are very cool in my mind, and apparently also work pretty well. I'm stuck with an ordinary hearing aid.

The possible effects on the facial nerve include several months of temporary paralysis, and less often, a more permanent kind that requires further surgery to address. On the bright side, a 30 year old dying of stroke during surgery would be a very rare event, especially since the surgical techniques have improved over the years. The procedure Phyl was describing, where they remove the bulk of the tumor by surgery, then treat the remainder with radiation, is sometimes done to help preserve the facial nerve, with good success rates as far as I can tell.

So what does that mean lies ahead for you? The next six months will not be ordinary. You will need some recovery time after surgery, probably a month or so. It is possible that you will lose hearing on one side. You might have some facial nerve issues of one sort or another, for up to six months. There is a small chance of a more difficult facial nerve issue that needs further treatment. Not something anyone would volunteer for, certainly, but not the end of the world, either. It happens all the time, and people make it through just fine. You might even scoot through it all with no side effects at all - that's happened too.

Catch your breath, try to shake off the panic, and take a little time to browse through the forum and learn more about it. You may want to find out about other doctors and second opinions, for instance. Plus, you can get a feel for the supportive people on this forum, who can help make the journey a little easier going.

Best wishes,

Steve

[leapyrtwins]

R -

forgot to mention in my prior post that there are probably others who have consulted with, or been treated by, the doctor you are seeing.  They might be willing to give you some feedback if you are interested in that sort of thing.

Also, if you want to find out about other doctors in your area for possible second opinions, let us know where you are located and I'm sure you'll get plenty of suggestions.  There is also a list of doctors on the home page of this website under "medical resources" that might prove helpful to you.  They aren't endorsed by the ANA, but they do need to have extensive experience in treating ANs in order to be on the list. 

Jan

aka Lucky Jan, apparently 

[Pooter]

R2,

As others have said, welcome to the forum.  Like you, I recently (~3 weeks ago) that I had a 30mm AN.  Also like you, I'm a 30-ish yr old, otherwise healthy guy.  Also like you, I met with my doctor and was told all of the things that you were told (too big for radiation, possibility of facial nerve problems, 4-6 weeks recovery time, etc..).  And, like you, I was pretty panicked at the news.

It's very overwhelming at first, but as you educate yourself about things, then I think you will be able to rest easier knowing that you've found it, and you're on your way to getting treatment for it, and you'll be just fine afterwards.  Nobody will be able to give you any guarantees about what short-term or long-term "effects" you will experience or how likely they are to happen in your situation.  Generally speaking, aside from tinnitus (ringing in the ear) and partial/total hearing loss in your AN ear, the other possible "effects" are generally low possiblities.  For example, it's now virtually unheard of that people die during surgery.  That was my first big fear, but after reading through this forum, that fear quickly went away.  I would ask your doctor if they do facial nerve monitoring during surgery.  This is where they monitor the facial nerve while they are doing the surgery to be sure they aren't doing any damage to it.  It will give them an idea if they should leave some of the tumor behind and follow up with radiation to kill the remainder (the "debulking" that was mentioned earlier).

As others have done, I encourage you to educate yourself by browsing the forum.  It's a WEALTH of information, testimonials, etc...  Also, if you want to send me a private message, we can share more details about our situations that might be similar.  FYI, I'm scheduled for surgery next Thursday.  So, the next week will be pretty hectic for me getting things prepared, but I certainly will respond to you. 

Regards,

Brian

[Jim Scott]

Hi, R2:

I'm sorry you have an acoustic neuroma diagnosis but you've discovered a good place to seek information and (non-medical) advice from real-life AN patients who understand what you're dealing with. 

I think your doctor gave you honest information and although he may have seemed a bit negative, he has to lay out the worst-case scenario as a matter of ethics.  However, the mortality rate for AN surgery is infinitesimal and shouldn't be a concern.  Eating hospital food is probably a greater risk  Prior posts from knowledgeable folks have explained what to expect so I won't belabor the point except to offer you my experience with the two--step procedure for treating my large acoustic neuroma.   I had a 4.5 cm AN pressing on my brainstem (not good, as you can imagine) and underwent a duel-discipline procedure that was very efficacious.

First, the neurosurgeon 'de-bulks' the AN, surgically hollowing it out and cutting off it's blood supply.  This was a 9-hour operation, in  my case.  Today, as Brian ('Pooter') mentioned, nerve monitoring is routinely employed to help the surgeon avoid damaging the delicate facial/cranial nerves that control facial expression and other crucial functions.  My neurosurgeon reduced the bulk of my AN from 4.5 cm to 2.5 cm,without damaging my facial or cranial nerves.  I recuperated quickly and my severe pre-op symptoms disappeared.  Three months later, as scheduled, I underwent 26 FSR (Fractionated Stereotactic Radiotherapy) treatments to destroy the AN's DNA.  They were not stressful and appear to have been effective, as my signature shows.

You'll be in the hospital for at least 4 days following the surgery, at least one of those will be in ICU.  Risks include CSF (cerebral spinal fluid) leaks, headaches and the aforementioned possible facial nerve damage, along with routine risks such as infections, that accompany any surgical procedure.  Assuming you avoid any real complications and depending on the surgical approach used, you'll permanently lose hearing in the AN-affected ear.  However, with some surgical approaches, such as 'Translab', whatever hearing is present at the time of the surgery may be saved or, at worst, diminished slightly.  Hearing devices are available that can help those with SSD but they're expensive, not always covered by medical insurance and require some minor surgery to implant.  I decided to cope with my SSD but others have used the BAHA (bone anchored hearing device) and been pleased with it.  Something to consider. 

Surgical recovery times will vary, of course, but anywhere from two to six weeks is average.  You should be able to return to work within 2 or 3 weeks.  Most facial, balance and other complications are resolved within a few weeks of surgery, although sometimes therapy is needed for some issues.  Your relative youth and good health are an important factor in your healing, as is a positive attitude.  A surgeon with 600 AN surgeries on his resume is likely quite competent in this area.  I would ask him about his 'outcomes' and how many (in percentages) of his AN surgical patients experience post-op complications, especially facial paralysis and CSF leaks, which are a real hassle.  I didn't have a CSF leak but some here have and it isn't much fun, although not necessarily life-threatening.  I concur with Brian ('Pooter') that you should ask about nerve monitoring during surgery as this is fairly crucial, in my non-physicians opinion.  I would definitely consult with more than one surgeon and look into the surgery/radiation approach.  There is lots of information on this site as well as on the web.  Don't rush into any procedure and be sure to do what feels right for you.

We are all standing by as a resource for you and to support you in your decisions as you travel on this journey no one really wants to take.  I always like to mention, on a positive note, an acoustic neuroma is benign (not cancerous) and treatable.  You'll get through this O.K.  I did (and I'm twice your age) and so have many others who will offer their story and encouragement as you peruse these forums.   Stay connected and let us help you in whatever small way we can.  We understand your feelings, fears and concerns because we've 'been there'.

Jim     

[lori67]

Hi R2 and welcome!

I don't have much to add to the words of wisdom already posted, but wanted to welcome you nonetheless!

And since Phyl mentioned a possible injection of humor every so often, I'll do that now... just be glad you weren't one of the first 300!!  I'd say the odds are in your favor.  Heck, we all made it through!  You will too.

And thanks, guys, for the metric conversion....math... ugh!!   

Lori

[leapyrtwins]

And thanks, guys, for the metric conversion....math... ugh!!   

Funny you should mention that, Lori.  I actually used Steve's little metric trick and guessed that 43 mm was 4.3 cm and apparently I was right!  Guess I'm smarter than I thought (no comments on that, please) LOL

Anyway, question for Jim and Pooter or anyone else who knows the answer.  Isn't facial nerve monitoring pretty much the "norm" during AN surgeries these days?  I know I had it and my neurosurgeon and neurotologist said they always monitor facial nerves, but are there docs who don't do this routinely?  Just wondering.

Jan

[sgerrard]

Anyway, question for Jim and Pooter or anyone else who knows the answer.  Isn't facial nerve monitoring pretty much the "norm" during AN surgeries these days?  I know I had it and my neurosurgeon and neurotologist said they always monitor facial nerves, but are there docs who don't do this routinely?  Just wondering.

I am curious about the answer as well. One thing about nerve monitoring that always bugs me: how does it really help? It seems to me the doctor makes a snip, then checks the monitor to find out either "all is still well" or "oops, that was wrong". How can it alert them to a pending mistake before it happens? Or, what do they do if the signal starts to fade - is there an Undo button?

Just wondering...

Steve

[leapyrtwins]

Steve -

I could be totally wrong, but I thought the facial nerve monitor alerted the doctors when they are getting too close to the nerve and in danger of doing damage.  Does that sound right 

All I really know is that in my case, it worked very well.  I had a small issue with my facial nerve post op, but steroids cleared it up in 24 hours.

Jan

[sgerrard]

Steve -

I could be totally wrong, but I thought the facial nerve monitor alerted the doctors when they are getting too close to the nerve and in danger of doing damage.  Does that sound right 

Hmm, maybe so, kind of a metal detector effect, perhaps. As the scalpel gets close, the nerve picks it up somehow electrically, and the tone changes. I don't know if that is right, but I'll buy it. It seems like it would have to be something like that, otherwise why would they bother with it? My ENT said he uses it, and I know many others do, so it must do something useful.

Steve

[4cm in Pacific Northwest]

R-2 …Welcome to the forum.

I am sorry for the reasons you have had to join us but nevertheless glad that you found us … I hope you will fill find this forum most supportive and come to appreciate the wealth of  knowledge fellow AN  patients have gained, with their own experience, and share with us all. As you feel bombarded with so much information at once- try not to get too overwhelmed….  AN tumors are typically very slow growing. Your tumor, 4.3 cm, is at a size where you DO still have time to do some research and make well informed decisions… but you cannot not put it off too long.

I had surgery in August and ordered information booklets from the ANA after  I got home from hospital. In hindsight I wish I had ordered these and read these before hand.

Here is the link. The booklets are not expensive and arrived within the week I ordered these (within the USA)
https://secure.baxinternet.com/~anausa/for_sale.html

I recommend that you obtain more than one opinion. Some neurotologists and neurosurgeons have more experience than others - with AN tumors specifically. You will realize this after a few interviews...You only want  a team with lots of experience!

Here is a list of surgeons with the ANA
http://www.anausa.org/physician_list.html

Here is a good list of interview questions to start with.
http://www.anausa.org/questions_for_physicians.html

I chose surgeon #8 of the 9 I interviewed. He and his partner shone and it was obvious in how my questions were answered (and his background checks) that he was going to be exemplary to work with. (And he was!) Not only is it important that you chose a skilled surgeon but also someone that you are comfortable working with and you know will be honest, sincere and upfront with you… and truly has the best interests of "the patient" at heart.

Do not read everything on the forum- it will be overwhelming and scary.
There are many successful stories on the treatment of AN tumors.
Often those people with success put their AN stories behind them and ‘keep moving forward’ with their lives – never to be heard from again (here on the forum.) Often they have a very good and caring support network that helps them through. However not all have that support but do very much find it here on this ANA forum. It is very important to start building up a support network now (pre-treatment).

You will find all sorts of various people here in the forum with experience as diverse as they are. Nevertheless there are many good and caring people here.

It is very important to understand that “size� is not the only consideration. AN tumors are sort of like real estate “Location. Location. Location� … Each case is unique… as are the treatment and recovery outcomes. (I too did not have the radiation options as mine was too big and already pressing the brainstem.) Again- remember that typically Acoustic Neuroma tumors are NOT fast growing… so do not let any surgeon pressure you into abrupt decision making.
You DO have time to weigh out ALL your options, research various medical institutions and interview a variety of surgeons.
Find out from your medical insurance how many opinions you can obtain.

Also know that this resource is available
http://www.healthgrades.com/

Read up on the watch and wait forum.
http://anausa.org/forum/index.php?board=19.0

It is also important to plan a surgery time which best works for your family and support system.

Information is power… just try not get too overwhelmed by it all at once.
Educate yourself (and your family) so that you can make good and informed decisions… and can plan life accordingly. Having a good support net-work of caring and understanding people is key for post treatment recovery.  There are also ANA support groups in various geographical locations that meet in person. Once one joins the ANA (as I did 2+ months post op) - then all the information of resources available in your location are sent to you. In hindsight I should have joined the ANA “beforeâ€? my surgery.

 
Know that there is support here- and you have landed a great website.



Daisy Head Mazy

[cmp]

Welcome to the forum, r2!

I'm sorry you are dealing with this challenging diagnosis, but I hope that some of the excellent advice you have gotten here will help you feel that it is more manageable, and that having access to more info will help you feel less overwhelmed and frightened.

I'm a member of the "large tumor at 30 yrs of age" club, though in my case my original diagnosis was 20 years ago! My tumor was a bit bigger than yours, and the procedure for debulking and then radiating to help preserve the facial nerve didn't yet exist. Though I did have lasting damage (which a second, much much easier operation corrected the worst of), Mazy's ("4 cm in Pacific Northwest") experience demonstrates that even WITHOUT the debulking-to-save-the-facial-nerve approach, you may very well come through just fine!

I wanted to echo Mazy's excellent suggestion that you shop around for surgeons you really feel comfortable with and confident in, and also that while you get ahold of enough information to help you understand your diagnosis and treatment, that you not let yourself get overwhelmed either! (That ANA booklet sounds perfect--wish it had been around 20 years ago!)

Hopefully having this forum as a resource will be an invaluable addition to your support network at home.

Will be thinking of you--
Carrie

 

[lori67]

I thought nerve monitoring was always used too.  Maybe not.  I'm not sure how it works, but maybe it's like that game "Operation" - when you get too close to the sides while trying to remove the funny bone, the patients nose lights up and buzzes...  Maybe it's the same when you get too close to the nerve...

Lori