SBRN Husband

[sbrn]

Just wanted to pop in my self and thank everyone for the comments and support. Like my wife said things have been very interesting the last week with all the news and trying to figure out what is going on. I do have a few questions that maybe someone can answer. Since my AN is in my right ear I do have moderate/sever ringing in that ear. Once I have the surgery and the tumor is removed will it go away or get worse? Also reading on the internet I have figured out sometimes too much information is not a good thing. What I mean is post of folks that have complications after surgery (facial,balance, ect) does anyone have any idea how often complications occur? I ma sure I will have more as time goes on but these are the biggest two at the moment.

Thanks ,

Greg

[Debbi]

HI Greg-

Sorry you have to be a part of our little "club," but glad you found us.  I was quite lucky to find this group the first week after I was diagnosed and these folks have been life savers for me.  I've also made some great friends here. 

I didn't have tinnitis so can't speak from first hand experience; however, from what I understand, it won't get better.  That does not mean that it will get worse, though.  If it really bothers you, you may want to find Mickey on this forum.  He's a W & W who has severe tinnitis and has had luck with what I beleive is a biofeedback device.  He also follows a dietary and vitamin regimen.  I know he'd be very willing to talk with you about this.

Ah, yes - information overload.  Sometimes you do need to filter what you see/read.  Early on, I found a series of videos on YouTube from a guy who had every conceivable complication.  It was the absolutely worst thing for me to see!  To this day, I still can't get it out of my mind - and the videos are still out there!  And, guess what?  I still can't watch them.  I guess what I am saying is that it is good to educate yourself, but you do need to make sure you are not just getting the "worst case" stories.  For every story like that, there are easily 10 more that are happy endings.  When you talk to treatment professionals (radiation, surgery) ask them what their specific statistics are for the various possible complications.  You'll find that they are usually quite low.  Don't be afraid to ask very specific questions.  Depending on the type of treatment, tumor size, and tumor location, the doctors should be able to give you pretty accurate statistics.  And remember that the majority of people don't have serious complications. 

If you aren't sure what to ask, this site has a great list of questions - http://anausa.org/questions_for_physician.shtml

Hope this helps, Greg!

Debbi

[tweety]

Hi SBRN,  I am 6 weeks post op Middle Fossa surgery.  I had tinnuitis prior to surgery and still have this post op.  Each person is different but I was told once you have tinnuitis it doesn't go away.   It has changed throughout these past 6 weeks and I find it less bothersome daily.  I have very little hearing in my right ear since surgery and that has been a change I am getting used to.  I had no hearing immediately post op and have regained a very little in the  past weeks.  I am a nurse and once diagnosed with this, I just wanted it removed.  I am also 57 and the idea of waiting was not something I felt I should do as our bodies age, surgery can become more difficult.  I was diagnosed March 5 and had my surgery June 8 2010 by Dr. Chen and Dr. Aziz at Allegheny General hospital.  I was just there for a post op visit and they told me to move on and forward with my life and that is what I am doing.  Recovery takes a while but positive attitude and faith in your surgeons means alot.  Good luck.  Tweety

[opp2]

Hi Greg, welcome to the forum. Sorry to hear about your diagnosis. There are many great people here to answer your questions and offer tidbits to help along the way.

I can only relate my own experience in regard to tinnitus (ringing in the ears) and what I learned about the possibilities of complications.

I had mild tinnitus prior to surgery and continue to have it now. I don't believe it is any louder now, but my hearing in the unaffected ear does seem more sensitive (meaning I find everything very loud).

In regard to complications. My research led me to believe that every surgeon does their very best to minimize or eliminate complications such as facial weakness and paralysis. However, the chance always exists, regardless. I did not suffer facial paralysis, only very mild weakness that I couldn't see, and that seemed to disappear within hours. Another person who had surgery with the same surgeon for a tumour only slightly larger than mine, three weeks earlier, suffered facial weakness, and does still, now 5 weeks later. Their face is slowly recovering, and will be nearly normal someday, they still suffer the associated side effects of that (eye issues, chewing problems, fatigue, depression etc).

You are right not to spend an inordinate amount of time on the internet as it can be overwhelming. But...of course there is a but...be prepared. For me knowing what was going to happen, what the risks were, some ways to work with complications if I suffered them all helped me be prepared.

All the best to you. I don't envy you, but I've been in your shoes. And in the end, here I am.

[grega]

Hi Greg .... great name, btw!

The following website might provide answers and comfort as your journey continues ..... it's by one of the fine posters herein .... Kate ... and her friends.

Go to http://anworld.com to see a lotta topics and a lotta links that I found very helpful.

Best to you!

Greg

[Jim Scott]

Hi, Greg ~

Welcome - and thanks for posting. 

My view on tinnitus is that it will not disappear after surgery and while it could intensify, it will likely remain about the same.  Mine did.  Fortunately, I have fairly 'low level' tinnitus so it isn't a big problem, just a minor annoyance. 

A 'ballpark' figure on post-surgical complications would probably be in the 20% range, although others may differ with that figure. and, I admit, it's just a guess based on the thousands of posts I've read on these forums over the past four years I've been a member.  Many post-op issues tend to be temporary, although with some, 'temporary' is a relative term.  We've read about post-op AN patients with facial paralysis that report movement 3 years later.  As always, the surgeon's skill and experience along with some luck (and, in my case, much prayer) are all factors and frankly, some things simply are going to be unknown until the surgeon actually makes the incision and can see the tumor.  Mine was bigger than originally diagnosed, about 5 cm., but I suffered no post-op complications to speak of and my experience is somewhat common.   

As for information overload; yes, that has the potential to be a problem.  You have to have perspective and understand that the folks with complications are seeking advice and some comfort so you'll see lots of those kinds of stories, here and elsewhere.  We're a support-oriented AN site so we welcome those posts and want to help those AN patients in whatever way we can.  However, to a 'newbie' (newly diagnosed AN patient) contemplating surgery, they can be daunting.  I'm happy to report that on these forms, we have lots of AN patients with good outcomes (like me) and even those that may be struggling usually have a positive attitude.  Of course, we can understand when a poster is facing all kinds of problems, post-op, and slips into periods of bitterness and/or frustration.  I probably would, too.  Still, we try to be positive but realistic, as I've been with my answers to your questions.  I trust you'll come away from this thread satisfied (to some extent).  Above all, please know that we'll support you all through your AN journey.  Don't hesitate to ask anything.  We may not be doctors and no one has all the answers but we try - and we care. 

Jim

[tenai98]

I had mild tinnitus before surgery and now it is GONE...occasionally I do get white noise but only after being in a noisey environment...I guess I'm a lucky one...I do have what Steve (a moderator) calls gaze induce tinnitus and that is when one glance to rigth/left with eyes, tinnitus is noticable...That is truly the only time I get tinnitus.
JO

[leapyrtwins]

Greg -

I'm surprised that your doc didn't give you all the statistics of side-effects possible with both radiation and surgery - my doc did.

As for the tinnitus, thankfully, I've never experienced it either pre or post op.

Good luck on your AN Journey.

Jan

[lori67]

Hi Greg and welcome!

I can't answer your tinnitus question because I didn't have it before surgery and I don't have it now.  Just wanted to comment on the information overload issue - yes, there are plenty of people who have had less than great results for various reasons, but there are tons who have had great results too.  Chances are, you don't see as many posts from those people.  Usually, the people who have issues are looking for solutions or ideas from others who have had similar issues, so it might seem like there are a lot more negative results.  You learn quickly that the best and most useful information about AN's comes from people who have them!    Don't get discouraged!

I sent a message to your wife - I used the same doctors and hospital you are considering, so if you want to discuss any particulars, let me know.  I am also a Navy wife and dealt with Tricare, so if you need help beating your head against the wall with that one, I can help you out!    Seriously though, they came through in the end and picked up the whole bill and it only caused a few extra grey hairs, which I had the doc shave off prior to surgery anyway!  The doctors office staff is great at dealing with them so you won't have to.

Try to relax (I know.. sounds ridiculous to tell someone in your situation) - there is life on "the other side"!

Lori

[Yooper]

Hi Greg,
Well, this is my first post. I, too, was a little worried because it seemed like there were a lot of people on here with lots of problems following surgery.  I think it's because when there's no problem, people tend to go on about their way and you don't hear about it.  I, so far, am one of those.  I had surgery (translab) on June 24.  I'm feeling great...only a little fatigue, but come on. That's really to be expected I think.  My surgery was at Michigan Ear Institute, my Dr. was Dr. Babu and neurologist was Dr. Peiper.  I have nothing but great things to say about them.  I certainly hope all goes well for you.  There are lots of success stories here for you.  Good luck!
Sara

[leapyrtwins]

Sara -

welcome to the Forum!

I've heard only great things about the docs @ Michigan Ear; glad you found them.

Also glad to hear that your surgery went well and you are on the road to recovery!

Greg -

forgot to say that yes, the internet can be scary (and I often hear from newbies the same thing about this Forum).  Keep in mind with the Forum though, that lots of people find us just after being diagnosed when they are trying to make their treatment decision.  Oftentimes we don't hear back from them once their treatment is completed, unless they have problems.  So IMO there are more good stories than we all realize, since only a very small percentage of us continue to post here.

Best,

Jan

[Lizard]

Greg,
Welcome to the forum, and yes information overload can be quite intimidating, but you will learn a lot.  I just wanted to say that every person's journey with AN's are different.  Its hard to say what you will experience after surgery.  Sometimes you just have to sit back and take it as it comes.  Also, I did not have tinnitus pre-op, but I do have it post-op.  As I'm sure you know it sort of becomes part of you and I only notice it when its quiet...
Well keep us posted throughout your journey and please express any concerns or ask any questions you have 
Take care,
Liz

[krbonner]

Tinnitus - this tends to vary a lot person-to-person.  Personally, my tinnitus is neither better nor worse than it was pre-op, but it is different now.  Just a different quality to it.

As for complications, a previous poster mentioned that it's the people with longer term complications that tend to stick around for continued support since they're still working through their journey.  Those of us with no complications move on and get back into life and sometimes even forget we were treated for an AN.  I'm one of those.  The best thing is probably to talk with your doctors about their statistics for post-op complications on their patients.  And remember that many without complications are just silent because they no longer need the support that forums like this can give to so many.

Good luck!
Katie

[suboo73]

Hi Greg!

I wanted to say welcome to the Forum, but sorry you have to join this exclusive club.   

For information overload - yes, there is A LOT of information out there. 
But, i believe that knowledge is power, so when you need to, take a break from it all.
Then, when you feel up to it, read more here on the Forum - lots of wonderful folks here with many good experiences.

I am here with my sister and BECAUSE of my sister.  Without her diagnosis, i never would have pursued and asked for the contrast MRI and might still be 'in the dark' today.

My thoughts and prayers are with you as you seek your treatment options/decisions.

Sincerely,
Sue

[moe]

Hi Greg,
Glad you posted. I remember your wife's posts and that you are in the military and trying to decide which direction to take before you retire.  I'm a Navy Wife (THE toughest job in the navy!) and also a nurse.

We are a good sounding board and will give advice if asked or may just give it anyway.

My tinnitus got worse post op, but the doc said it could be the same, get better or worse. You just don't know.

As I recall your AN is on on the small side?

I joined the forum after all was said and done, and continue to help support others because I basically have "been there done that", so  don't let my signature on the bottom scare you. I just had one of those insidious tumors that had been in there for +20 years they think, but didn't really scream any symptoms at me. So you are ahead of the ball game, you know it's there, and it can be taken care of.

Glad you posted and let us know how things go...
Maureen