Newly diagnosed

[Jeremy/Erica]

I am writing in lieu of my wife Erica.  Erica (just turned 30) was diagnosed via an MRI on Friday to have an acoustic schwannoma (sp?) of 2 cm.  Erica experienced several weeks of tinnitus and first saw her primary care physician who recommended an audiologist to her.  The diagnosis went from there.  We are in the process of gathering information and learning about this condition.  We are a bit nervous.  I told Erica that we have had someone come between us and that it's name is "schwannoma."  Just trying to keep Erica laughing

We live in Seattle and are going to see a neurologist at Swedish Hospital (Dr. Foltz) first thing Monday morning.  I am looking forward to getting a more complete explanation of Erica's condition. 

Just from a cursory look into this issue it seems like it is rather difficult to find where the absolute best centers/doctors for treatment are available (both surgery & radiation).  Does anyone have any suggestions for us?

I have many other questions... I am sure that I will be back here in search of answers, suggestions and your experiences.  Thanks for being available.

Best

Jeremy

[sgerrard]

Hi Jeremy and Erica, and welcome to our fun little club. 

2 cm is considered medium size, so you should be able to take a little time to gather information and explore treatment options and locations. You will find this forum useful both for information, and for support from all the good people here.

Since you are on the West Coast, two places popped into my mind that you might want to look into:

1. House Ear Clinic, http://www.houseearclinic.com/index.htm, more or less the Mecca for surgery on acoustic neuroma (aka vestibular shwannoma). You can call them, and arrange to mail your MRI films and hearing test reports for an evaluation.

2. Dr. Chang at Stanford U., a neurosurgeon who also does Cyberknife radiation. You can find his email address on the Cyberknife support web site, http://www.cyberknifesupport.org, under About the Doctors. I send him an email, he replied on a Saturday, I mailed him a CD of my MRI, and he emailed back his evaluation, and also answered follow up questions. Since he does both surgery and radiation, he can give you a straight up opinion on your options.

There are many other good centers for treatment. After your Monday appointment, come on back here and tell us more. And don't be frightened; these things can be a royal pain, but you will make it through the process. We will be here for you all the way.

Steve

[Lorenzo]

HI Jeremy and Erica,

You found a great place to come for support and advice. Steve already gave you good pointers.
Let us know how you got on on Monday and please do come back and ask us anything, one of us will have an answer or suggestion!

All the best, Lorenzo

[leapyrtwins]

Jeremy & Erica -

hi and welcome.  Steve's suggestions are great ones.  I believe there is also a list of physicians who treat ANs on the ANA website, if you'd like more suggestions.  There is also much valuable information to be had from the ANA.   If you contact them, they will send you a great assortment of brochures that tell what ANs are, how to treat them, etc., in layman's terms.  I found their information to be extremely helpful and informative.

Good luck, and let us know how it goes on Monday,

Jan

[oHIo]

Welcome Jeremy and Erica. I think the shock of our diagnosis is the hardest to digest.  Once you are over the shock, then you can start thinking about treatment options.  Write down all of the questions you can think of and take them with you to the doctor.  Leave space to write down the answers because you will not remember everything the doctor says.  I always take someone with me because four ears (or three) are better than two (or one if there is a significant hearing loss)  Sorry, a little AN humor thrown in there. 

Best of luck to you both.  You have time to make decisions and do not need to feel rushed into anything.  You must ultimately come to a treatment or non treatment decision that is right for you. 

[Obita]

Hi Jeremy and Erica:

Sorry you need to be here but, welcome to the forum!

There are many people on here from the Seattle area.  I can't remember exactly who but there are some that
went to Seattle Ear Institute.  I am sure they will post here shortly. 

Good luck tomorrow and hang in there.  Kathy

[Omaschwannoma]

Would like to add to the already great information above me.  Through the ANA (this site) you can get CD's of the most recent Symposium held in Philadelphia this past July where it brought together the doctors from numerous institutions in America that treat AN's.  There you will find great information on treatments pre and post that are up-to-date.  I attended some of the many question/answer sessions and found them to be  very informative. 

Your wife is fortunate to have you in her corner now as there will be loads of information in dealing with the AN from doctors, centers for treatment, types of treatment, etc. for her to absorb and sort through.  We all have done the same and know it is overwhelming at times.  Good thing you found this support group as this is it's purpose!  Take tape recorder to all visits with doctors as it helps with the recall later.  Remember you have time to search this out so remind yourself and your wife, to take time to back away from information overload to recoup and regroup. 

[linnilue]

Welcome to both of you.  You will find this site to be indispensible through this journey.  I think you should loolk through the threads of Adrian and Samantha because, like you they are a great young cuople who just recently went through this together.  And together they did it well.  We were with them all the way and we will all be here for you with any and all questions from the minute' to the most complicated.  This is a forum that is a wealth of good, recent and updated information.  I'm sorry that you have to be hee but we will help guide you in any way you wish, just ask. I agree with Steve (it's funny, we agree alot!) come back here and post on Monday and let us know what the docs had to say, what they think your best options are and we will all discuss.  My brother lives in Seattle, Mercer Island, in fact, he just moved from Lake Washington Blvd. East if you know the area.  Best of Luck to you both.  This is so hard to grasp but you will come to grips with it and you will get on with your lives.  I promise...Holly         

[Sue]

HI,

I live in Vancouver, WA and I treated my 2 cm AN at The Gamma Knife Center of Oregon at Providence in Portland.  Obviously, you have some great options in the Seattle area.  There have been many people on here who have had their microsurgery done in Seattle.  Hopefully they will chime in soon! 

This is a great forum and the folks on here can be very helpful and also offer you as much support as you need. This is a great place to ask your questions and to vent your frustrations and fears. We've all been there to varying degrees and certainly can sympathize with what you two are going through right now.  It's not the easiest thing to be zooming along the superhighway of life, and then find yourself suddenly on a detour you didn't plan.

Hang in there.  It will be okay.

Sue in Vancouver WA

[Jim Scott]

HI, Jeremy and Erica:

Although I'm sorry that Erica has been diagnosed with a Vestibular Schwannoma (Acoustic Neuroma, or 'AN' for short) it isn't too large and (non-invasive) radiation is likely a viable option for her, if she wants it.  There are lots of competent doctors and facilities in the Seattle area that can treat your wife, so you are somewhat fortunate, considering the relative rarity of AN tumors.   

We all wish Erica the best as you folks educate yourselves and begin your personal 'AN journey'.  We're here to help as best we can and we look forward to hearing from you both in the weeks and months to come. 

Know that many prayers are going out to you both.  Stay strong and you'll get through this just fine. 

Jim

[Jeremy/Erica]

All:

Thanks for your replies, advice & information.  It is much appreciated.

We met with Dr.'s Foltz and Mayberg at the Swedish Neurological Institute at Swedish Hospital.  The recommendation was 55-45 for surgery.  We are setting an appointment for a 2nd opinion with a physician at the University of Washington. 

We've also contacted a family friend who is a radiologist at Mayo, Rochester.  He is going to help with suggestions on AN teams here in Seattle and on the West Coast as well.

Seeing the MRI was pretty surreal.  The tumor was described as having an "ice cream cone" shape to it by the Doc.  Pretty innocuous description, but hey, I guess "schwanomma" is a pretty benign term too (had to go with the bad pun- sorry).  2 cm equals the size of a cherry.  It's also pretty crazy to know my wife has this in her head but is almost completely asymptommatic.  We exercise regularly and have continued our regimen.  Our bodies are amazing especially how they can adapt!

We're going to conintue to research our options and find teams that do the types of procedures we are looking at on a very frequent basis with good outcomes.

Wish us luck.

Thank you again for all of your replies.

Best

Jeremy/ Erica

[sgerrard]

I agree with Steve (it's funny, we agree alot!) come back here and post on Monday and let us know what the docs had to say, what they think your best options are and we will all discuss.         

I agree, it is funny! Woops, agreed again! 

All:

The recommendation was 55-45 for surgery....It's also pretty crazy to know my wife has this in her head but is almost completely asymptommatic....Our bodies are amazing especially how they can adapt!

55-45 is pretty close to a toss up, I guess. I suspect that as you dig in and research, one of the options will begin to emerge as the one that is right for you. If you can be patient, it will start to become clear to you what you want to do.

ANs are nutty about symptoms. Some people had tiny ones giving them all sorts of grief, others had golf balls parked in their head and never noticed anything. They are also all over the map in responding to treatment, making your choice that much harder, since you can't be certain how yours will respond.

It sounds like you are off to a good start with some good leads. Hope it continues to go well.

Steve

[mindyandy]

Hi Jeremy/Erica
I am 29 years old and from the Seattle area. I just found out in September that I have an 1.4 cm AN. I'm still having problems learning to deal with the news. I saw Dr. Backous at Virginia Mason. He told me to look at my options & come back in 6 months for another MRI. Well I have decided to make an appointment at the Seattle Cyberknife Center. My appt. is next week. I understand all Erica is going thru. If she would like to contact she can. Also have her check out www.cyberknifesupport.com
Doctors can help answer some questions. Its a great website for support just like this website.
I hope this helps.
I also have met some people around the Seattle area that would love to meet her (online support) it helps to know your not alone.

Mindy

[matti]

Hi Jeremy and Erica,

Welcome to the forum!  Since you are from the Seattle area, I wanted to mention that in the Community section there is a post regarding a get together (lunch) with several ANer's from your area on November 17th. It would be wonderful if you could attend.

Hugs,
Cheryl

[hhb]

Jeremy/Erica:
 I live in Seattle. My husband was diagnosed with 2cmx1cmx1cm vestibular schwannoma. He is having a retosig surgery tomorrow at Virginia Mason with  Drs. Nusssbaum and Backous. Dr. Nussbaum is regarded as the primary surgeon. We have been long time patients at Virginia Mason.  My husband choose surgery over radiation as he wanted to "front load" the complications. I was willing to travel to get the most experienced surgical team available but my husband felt once the surgeons had done a certain number of surgeries their skills were good. He wanted to stay close to home.
My only issue with the process was with the pre-op anesthesia appointment where we never saw a physician to explain risks and complications. But the surgeons spent lots of time explaining process.
They also gave us chapters from medical textbooks explaining VS and published papers talking about patient decision making.

The information comes in waves and seems overwhelming. I comes to see this as a tumor which in not bad (95% benign) but in a bad location.

Good Luck.