Recently discovered AN

[dahski]

Hi everyone, I have been scouring these boards for a few days now and decided to join with a post of my own.  I first experienced hearing loss in 2003, but the MRI at the time showed nothing.  At the beginning of this month, I experienced a similar but more severe hearing loss and the MRI this time around discovered a 9mm AN.  I'm 29yrs old and in good health, but struggling with how to approach this.  A cycle of prednisone again brought my hearing back like in 2003, and besides some recent bouts with vertigo, I am experiencing no other symptoms.  My mother is completely deaf in her right ear (not AN related), so I am familiar with the hardships of dealing with the hearing loss. 

Currently struggling with whether to choose b/w W&W and surgery.  W&W presents such anxiety of helplessly waiting while I leave hearing loss up to chance.  But surgery is obviously no walk in the park and doesn't guarantee salvaging hearing either.  To further complicate matters, I am getting married at the beginning of May 2011.  It is just so difficult to make an informed decision when so much of the details are about as clear as mud.  My gut tells me to deal with this head on and elect surgery, but my fiancee seems to be very much against that route, I think partly b/c she recently watched her mother go through a different major surgery.  Ideally, I would appreciate if someone can send me a crystal ball...

[fbarbera]

Radiotherapy is also an option.  Read my site (in my signature line), where I describe my own decision-making process. 

Whatever you choose, just know you'll be fine and life will get back to normal soon enough.  And congratulations on your engagement!

Best,
Francesco

[TJ]

You do have some time to make the correct decision for you.  As mentioned in previous post CK or GK are also options for you since the AN is still fairly small.  I believe they can use either type of radiation up to about 2.5 cm.  You need to do all your research and ask a ton of questions.  Both surgery and radiation have good and bad points that is why it has to be your decision and you need to be comfortable with it.  I can tell you I just finished CK for a AN just a bit larger than yours.  So far it was been fairly easy to handle.  Went back to work each day of radiation.

Take the time to look at all options.

Best of Luck

TJ

[leapyrtwins]

Radiation may or may not be an option; depends on the size of your AN and I don't see that you've mentioned that in your post unless I missed it.  Most docs will radiate an AN of 3 cms or less, but location as well as size can be a factor.

My personal opinion is don't let your fiance influence you - it's your AN, your head, and you need to make your own decision.  You need to do what is right for YOU.

Before you can decide that though, you need to educate yourself on all your options and the risks/side-effects involved.

If you haven't already you should contact the ANA for their informational brochures, they are very helpful.

You should also make sure you see a doctor - or doctors - who do surgery and radiation.  Docs who only do surgery tend to recommend surgery; docs who only do radiation tend to recommend radiation.

I'm not sure where you are from, but if you need suggestions on doctors we're always willing to give you our opinions.

As someone who had surgery, I just want to note that the recovery isn't that bad.  If you had it in the next few months chances are very good you'd be pretty much back to normal before your wedding date.

I'm not at all saying you should have surgery - that's your choice; just giving you my two cents worth.

Jan

Just noticed by reading Clarice's post and re-reading yours that your AN is 9 mm.  Unless location is an issue for you radiation, as well as surgery, should be an option.

[CHD63]

Hi dahski .....

Just wanting to add my welcome to this forum of caring, supportive friends who have "been there, done that ....."  The decision-making for treatment is one of the biggest hurdles of the whole process.  You are right to do as much research as you can, ask all the medical professionals their advice, etc. ..... but in the end, you are the one to make the decision for waiting or what type of treatment ..... it's your body.  You can send a copy of your MRI to House Ear Institute in LA (probably the place in this country with the most experience in surgically removing ANs) and/or Stanford University (experts in radiation treatment) for free evaluations with no obligation.  There are other places, as well, I am sure ..... and several other excellent facilities for good treatment.  If you decide to go for treatment, it is important to seek the most experienced medical professionals (in treating specifically acoustic neuromas) that you can find.

At 9mm, you should have all three options:  1) waiting a while longer 2) surgical removal or 3) radiation treatment (gamma knife or cyber knife).  As Jan said, the specific place your AN is growing is a factor on which of these you should choose ..... as well as how rapidly your symptoms are increasing.

Let us know if you have any specific questions ...... alas, none of us owns a crystal ball (as far as I know!  ).

Many thoughts.  Clarice

[moe]

Dahski,
Welcome to the forum.
It WOULD be great if a crystal ball could just appear to show the course for you.

This is the hardest part. And it takes patience, to look at the options, and get all the info. Once you have made your decision, you'll feel much better.

Mine was med-large and compressing the brain stem significantly, so I didn't have to worry about choosing.

Let us know what the different docs say. You may be able to watch it for now. It is a frustrating time, hang in there, and try to enjoy the holidays.
You've got LOTS of time to explore options.

Keep us posted and congrats on your engagement!
Maureen

[Jim Scott]

Dahski ~

Hi and welcome, although I'm sure you would rather not have a reason to join this website discussion forum.  All the salient information has already been posted by our helpful members and I can't remember where I left my crystal ball so I'll simply wish you good luck as you ponder and pursue your options in the days and weeks ahead.  Oh, and congratulations on your engagement and forthcoming marriage.

Jim  

[Tumbleweed]

Hi, dahski:

You may find my post (half-way down the page) at this link helpful:
http://anausa.org/forum/index.php?topic=6670.0

In it, I summarize the risks and benefits of surgery vs different types of radiation.

I recommend you get at least a second, if not also a third, opinion from doctors who have lots of experience treating ANs. You can get free consultations from:
1. Dr. Steven Chang (neurosurgeon and CyberKnife (CK) practitioner at Stanford University Medical Center; regarded by many to be the pre-eminent doctor and medical facility for CK treatments). His email address is sdchang@stanford.edu
2. Dr. Derald E Brackmann (famed neurosurgeon at House Ear Clinic in California, he developed most of the modern techniques in brain surgery)
3. UPMC (University of Pittsburgh Medical Center); they have more experience with GammaKnife (GK) than any other facility in the US.

Best wishes,
TW

[jaylogs]

Hello Dahski, and welcome to our little club.  I am sorry you had to join it, but such as it is you can't find a better place.  That's solid advice from the others: it should be YOUR decision, or at least one that makes you feel to most comfortable. Once you do make and it still feels good, then that's the right one! Continue to post questions if you have any, or just to vent.  We've all done some venting on here at one point or another. You won't be judged as all of us have been there at one point or another.  Take care and let us know how it goes!
Jay

[suboo73]

Welcome, Dahski,

Glad you found this forum - there are many WONDERFUL folks here that will listen to your concerns and try to answer your questions!

As others have mentioned, you have time to do research and make a choice of treatment that works for you.
(I am here with my sister, having been diagnosed about 6 months after her. Initially we discussed treatment options, but ultimately came to our own conclusions as best suits our individual needs.)  I believe you too will make a decision that is right for you.  But as you will discover, this may take some time.

You are young and in good health - so take some deep breaths and when you need to, take a break from the research.
We will be here when you have other questions/concerns.

All my thoughts and prayers are with you (and your finance) on this journey.

Take care and keep in touch.

Sincerely,
Sue

[6pick]

Hiya, Dahski. As others have said, nice to meet you, sorry it's under these circumstances.

I can only repeat and support (for emphasis) what everyone else has said:

This is your decision and yours alone. Get more than one opinion (Jan is absolutely correct: a surgeon will generally recommend surgery, a radiologist will generally recommend radiation. If your favorite tool is a hammer, everything looks like a nail). Come here for questions, answers, crying, laughing . . . no one understands like we do.

As you can see from my signature, I had CK at Stanford about 6 weeks ago, and so far, so good. I thought it might be helpful for some if I "journalized" my daily sessions so you can read that on my post entitled, "My turn to nuke the alien . . ." I hope it helps.

And the very best to you and your fiancee on your upcoming wedding.

Mark

[Vivian B.]

Welcome to the forum. As you are aware this time can be very overwhelming but since your AN is small, you have time to make a decision. Either way the hearing is affected to what extent depends on treatment and progress. Sometimes you need to just take some time and digest what you have learned in order to make a decision which is not always easy but you will make a decision in time. Some doctors like the W & W for the first year to see if it's actually growing as there could be a period that it does stop in some cases. There are a lot of people on W & W on this forum. It may help you to read their stories. Ultimately, if you decide on a treatment as you know you can consider radiation. As overwhelming as it may seem, just think positive and know that at least it is a condition that can be treated either way. Good luck on your wedding.

Vivian   

[TOM101]

Hi,

No crystal ball but I just finished listening to this discusion and it is a must for all of us.
http://www.myacoustic.org/steven-chang-interview-acoustic-neuroma-treatment.html
I'm going to stanford in the morning but this is an excellent analysis the AN situation.

Tom

Hi everyone, I have been scouring these boards for a few days now and decided to join with a post of my own.  I first experienced hearing loss in 2003, but the MRI at the time showed nothing.  At the beginning of this month, I experienced a similar but more severe hearing loss and the MRI this time around discovered a 9mm AN.  I'm 29yrs old and in good health, but struggling with how to approach this.  A cycle of prednisone again brought my hearing back like in 2003, and besides some recent bouts with vertigo, I am experiencing no other symptoms.  My mother is completely deaf in her right ear (not AN related), so I am familiar with the hardships of dealing with the hearing loss. 

Currently struggling with whether to choose b/w W&W and surgery.  W&W presents such anxiety of helplessly waiting while I leave hearing loss up to chance.  But surgery is obviously no walk in the park and doesn't guarantee salvaging hearing either.  To further complicate matters, I am getting married at the beginning of May 2011.  It is just so difficult to make an informed decision when so much of the details are about as clear as mud.  My gut tells me to deal with this head on and elect surgery, but my fiancee seems to be very much against that route, I think partly b/c she recently watched her mother go through a different major surgery.  Ideally, I would appreciate if someone can send me a crystal ball...

[JHager]

Hey,

Congratulations on your upcoming marriage!  Not that I can add much to the previous medical discussions, but I will say this: I would NOT have wanted to go on my honeymoon anytime within the first six months or so of my surgery.  I was just too fried to have, ummm, enjoyed myself. 

As folks have mentioned, you have the gift of time.  Use it, plan your approach, get married, and then go with the plan.  My wife was understandably freaked when I came home with my MRI films (great dieting aid, by the way), but she was essential to my recovery.

Annnnnnd... that's all I have.

Good luck!