recent diagnosis of acoustic schwannoma

[mbnolde]

I have been recently diagnosed with a very small (less than 1/16 inch) cochlear schwannoma after a sudden onset of tinnits in the right ear.  I received my diagnosis at the University of Virginia Hospital by Dr. George Hashisaki.  Does anyone know him?  Seen him?  Any experiences at U.Va. Hospital?  I am contemplating a 2nd opinion.  His recommendation was to watch and wait, but I want to be sure that is the best option.  I already have a little hearing loss, am 56 years old, and do not want to risk losing all of my hearing if possible.  I already wear a hearing aide in the left ear for an unrelated problem.  Any information is welcome.  Thanks so much. 

I am just beginning to gather information about this previously unknown condition.....where are the best places to find informatin?

mb nolde

[lori67]

I don't know the doctor you mentioned, but I have heard good things about the AN program at U Va.  I moved here (Nashville) from Virginia and will be going back there in about a year or so, and my surgeon here has mentioned U Va and spoke highly of the them there.  I had asked him if he knew of anywhere close to where we'd be when we moved back and that's where he recommended.  I know my doctors recommendation probably doesn't mean much since you don't know either of us, but I'd say I'm living proof that he knows a thing or two about these things!

The best person to point you in the right direction as far as finding everything you always wanted to know about this condition but were hoping you'd never need to know about it in the first place is "4" from the Pacific Northwest.  That's her screen name, I'm sure she has a real name too.  She is a walking encyclopedia of websites you can check out for some reliable information - and great for a nice pep talk too, when needed.

You've come to the right place.  There are lots of great people who will be more than willing to answer your questions.

Good luck and keep us posted!
Lori

[4cm in Pacific Northwest]

( gee whiz … shucks Lori…  )

mb nolde,
Fortunately your tumor is very small as 1/16 inch = 1.5875 mm and the wait and watch approach , based on what I have read, sounds like good advice to me. Acoustic Neuromas (AKA cochlear schwannoma or vestibular schwannoma) are typically benign and slow growing.

This ANA forum is an excellent place to get information hopefully you have already seen this webpage
http://www.anausa.org/treatment_options.html

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 if you ever intend to have radiation or surgery. Some neurotologists have more experience than others. You will realize this after a few interviews...You only want one with lots of experience!

Here is a list of surgeons that have met the criteria to be on the list 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.
 
It is very important to understand that “size� is not the only consideration. AN tumors are sort of like real estate “Location. Location. Location� … and some people (even those with larger tumors have various options to choose from (I did not have the radiation options as mine was too big and already pressing the brainstem.) 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/

I thought this was money well spent- particularly when I discover that one surgeon (team) I was seriously considering had multiple malpractice suits … not to mention  the least accurate on my tumor’s (final)  pathology prognosis. You want to know ALL this information before you go in for treatment. It will also give you a rating on the hospital the surgeon(s) works at - for neurosurgery etc.

There are success stories for both surgery and radiation. Often those folks move on in their lives …leaving their AN stories behind. We do not always hear from them on the forum here…

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, if you ever go that route, which best works for your family and support system.

Here is a good link I found on post-op hospital discharge expectations put out by the Acoustic Neuroma Association of Canada if you chose surgery

http://www.anac.ca/en/dischargeTreatment.shtml

Information is power… just try not get to overwhelmed by it all at once. Educate yourself (and your family) so that you can make good an informed decisions… and can plan life accordingly. Having a good support net-work of caring and understanding people is key for post treatment recovery. Some do not always have that in their personal lives but DO find support here on the forum. 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.

I hope this helps get you started. This ANA forum has many great people on it – who have personal experience of being an Acoustic Neuroma  (AN) patient … you will find  informative and caring people here. Welcome!

Keep moving forward!

4 

[lori67]

See - I wasn't kidding!   

[mbnolde]

Wow "4"....THAT EMAIL WAS AWESOME!!  I, too, am a person who feels that knowledge is power in anything.  I will look into ALL of the information you sent my way!  Thanks you so very much for your candor!  I have decided to get a second opinion anyway to be sure watching and waiting is the thing to do....I Just need to find someone that is not too far away from my location. 

I am still having some difficulty wrapping my brain around having a tumor growing inside my head.....and have not talked about it much to anyone except my husband.  As soon as I gather more information, I will talk to friends and family. 

Thanks again for all your help. 

MB

[kristin]

wow! I think that's the earliest detection of an AN I've seen since I've been here!

I'm not a professional, but I would say watch and wait. No...I would say, send your MRI and audiogram to Dr. Brackmann at House and see what he has to say. He'll know what you should do and he'll call you personally and discuss your options free of charge.

This is from their website (www.houseearclinic.com)

COMPLIMENTARY ACOUSTIC NEUROMA CONSULTATIONS

 
If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or FAX a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This consultation is free of charge. (This offer does not apply to office consultations.)

Hope you find this helpful,

Kristin in Montana
 

[ppearl214]

Hi Kristen,

As many, including myself, agree that HEI is top notch in AN treatments, please keep in mind that there are many other locations around that also offer free consults (as I learned first hand) that also do great AN work....... many, for personal reasons, cannot go to LA to HEI and hoping that others here can also share their personal experiences with their surgeons and also answer mb's question about UVA.   Thanks for sharing about HEI and hoping others will chime in with their experiences as well. (and 4, OMG, that wireless of your's certainly gets a great workout! )

Hi mb and welcome.... good to see you here.  As you can see, there is a wealth of options noted here, from radiosurgery/radiotherapy to microsurgical. Since you are fortunate that your AN was found at a very small stage, you have time to research all treatment options. Since your's is so small, watch and wait is a terrific option and many here are in watch/wait mode and there are some that have gone years and years in watch/wait with no AN growth happening.

I know the forum boards can be overwhelming with info, but we are here to help.  If you do a "Search" for questions you may have (ie: UVA, etc), you should find many posts that may answer many of your questions.

Hang in there..... we're here to help....and again, welcome....
Phyl

[HeadCase2]

Hello mbnolde,
  As you're considering what, if anything, you're going to do, UVA has one of the better known Gamma Knife centers.  Dr. Steiner has been involved with GK since it's inception.  http://www.healthsystem.virginia.edu/internet/neurosurgery/gamma-knife-new.cfm
  As you've probably already heard, you have three options; microsurgery, radiation, or watch and wait.  Look for treatment centers and doctors with the most experience in treating AN-- this gives you the best odds of a sucessful outcome.  You're lucky, in a sense, that your AN has been discovered when it's small.  And since they are almost always slow growing, that gives you plenty of time to find out more about AN and AN treatment.  My guess is that many doctors would advise you to wait at least until the next MRI (in 6 months or a year) to find out if it's growing, and if it is, at what rate.  MRI measured sizes have some variation between differing MRIs, related to how the MRI "slices" intersect the tumor, so doctors may or may not not get excited about a 1 or 2 mm change.
  You can also get a copy of the MRI on CD, for you to look at on your PC.
  There is a lot of good information on this forum. Try to keep in mind that many people have been successfully treated and have moved on with there lives.  And no longer post of the forum.
  Welcome to the forum, and best of luck.
  Regards,
    Rob
 

[mbnolde]

  WOW!  Thanks so very much for all the great, supportive replies to my email.  I am still researching whether anyone has actually had this surgery at U.Va. Medical Center....my next closest option would be MCV in Richmond...anyone know anything about that place in regards to AN?  I haven't completely decided about a 2nd opinion, as I may wait until my next MRI summer of 2008 to see if it is growing or not. 

My diagnosis was so early because of developing tinnitis suddenly...went to my local ENT...who sent me to U.Va. right away.  I have been told the location of it caused much earlier symptoms than many have...hence the ability to see it now instead of when it is much larger. 

My problem at this very moment is that it seems to occupy my thoughts to the detriment of other things that I need to focus on....like my family...work....etc.  My husband has been the only one who knows this at this point....I will tell rest of family after my daughter's graduation from college in a couple weeks.  I have had difficulty wrapping my mind around the news.....but this blog has really, really helped. 

Thanks to ALL who have been so supportive!  You all are great!!  I am not sure about sending the MRI to california....it is awfully far away. 

MB

[kristin]

Hi Kristen,

As many, including myself, agree that HEI is top notch in AN treatments, please keep in mind that there are many other locations around that also offer free consults (as I learned first hand) that also do great AN work....... many, for personal reasons, cannot go to LA to HEI and hoping that others here can also share their personal experiences with their surgeons and also answer mb's question about UVA.   Thanks for sharing about HEI and hoping others will chime in with

Phyl

OUCH! Why don't you "chime in" with your thoughts instead of degrading my advice? I'm sorry I had a good experience at HEI and want to tell others about it. It really made me upset to read your post. You don't know that this new ANer cannot go to LA...why not give ALL options? I obviously cannot give another side as I don't have one, so I give MY experience....

[4cm in Pacific Northwest]

I flew to LA and did have a consultation with Dr Brackmann. I wish I had known before hand     that I could have sent my MRI and reports into House for free and had a consultation over the phone  (however please know I have no regrets in meeting Dr. Brackmann – he is truly a wonderful man who has helped many AN patients and I feel very honored to have met him in person  ).

Canadian physicians even send there atypical or tough AN cases to him... he has awards from the British & Canadian Neurosurgeons Societies on his wall… so it is not just USA patients that fly to see him.

I also think, based on my calling around, that HEI is the only institution that is really researching to find “the cause� of Acoustic Neuroma (correct me if I am wrong- I did not get responses on my post http://anausa.org/forum/index.php?topic=5438.0 … that pointed me to any other research group.)

However now it is Christmas, appliances are breaking down, winter tires are thin and too need replacing and the year-end-budget is tight as we spent much of it on out-of-pocket travel expenses for AN research, out-of-state surgeon interviews and surgery last summer. (Nevertheless I am blessed with life and thankful to having a great surgical team in this AN journey. Giving means more than many shiny wrapped presents under the tree ... and my kids know this... and they are happy to have Mom home this Christmas.)

I think AN postie’s need to know that House will look at the MRI for free (and that some other Medical institutions will do this too)

My case was very "atypical" and we consulted with 9 surgeons. (Many, from various universities, did this on the phone for free after viewing my MRI.) Even though I did not go to House I have to tell you the most accurate prognosis of what my weird tumor was going to be when it finally came out -was in fact Dr. Brackmann’s. (He has also probably dissected more Acoustic Neuroma tumors than anyone in the world.) My own surgeon did a fabulous job and is still my #1 – but you know he was trained by Dr. Brackmann in yesteryears. Dr. Brackmann knows who the reputable surgeons are around the globe and can inform out-of-state patients of such.

I think Dr. Brackmann (asother House physicians) is an excellent person to consult with on “surgical options�… along with hearing what newer physicians have to say on the radiation option (that is if a person has that option – I did not have that pre-op option). I was stuck between a choice between 2 surgical options (only) and my surgeon, Dr. Jackler, gave me good clear counseling on what are the pros and cons of both. (I just knew, in my gut feling, that he was who I wanted to work with because he was very familiar and experinced with older and newer treatments.) Even though I did not end up at House- Dr. Brackmann has continued to show a keen interest in my getting well. Like my own surgeon there is no question in my mind that he is a physician who has the best interest of the patient at heart.

I could also chime in about McGill University, University of Western Ontario etc and Michigan Ear Inst as they too were most impressive ... but for me (and my atypical case) and my location ( ie the PNW) I chose Stanford... However I will admit I primarily chose Stanford because I wanted Dr. Jackler and his neurosurgeon partner specifically.

mb nolde,  ... I am not sure how far you want to travel and what your limitations are thus I never mentioned a specific doctor or place.
Are you limited to Virginia?  (A state I'll admit- I am not the least familiar with.)

Maybe start a new post with "east coast?" or "Virginia?" in the subject heading ... you may get more replies from folks closer in your area.

4


P.S. Kristin in Montana- how much snow did you get this week- over there in Big Sky State. When I was a kid in Alberta (roaming Dina sour Park  )- we used to drive to Whitefish to ski. When we get snow in Oregon everything shuts down with just a sprinkle of the white stuff... today it stayed on the ground for a whole hour  . I would love snow for Christmas ... has yet to happen in the decade I have been living here... maybe... just maybe... this year?

[Joef]

Hi Kristen,

As many, including myself, agree that HEI is top notch in AN treatments, please keep in mind that there are many other locations around that also offer free consults (as I learned first hand) that also do great AN work....... many, for personal reasons, cannot go to LA to HEI and hoping that others here can also share their personal experiences with their surgeons and also answer mb's question about UVA.   Thanks for sharing about HEI and hoping others will chime in with

Phyl

OUCH! Why don't you "chime in" with your thoughts instead of degrading my advice? I'm sorry I had a good experience at HEI and want to tell others about it. It really made me upset to read your post. You don't know that this new ANer cannot go to LA...why not give ALL options? I obviously cannot give another side as I don't have one, so I give MY experience....

Kristen , there was no degrading intended! ... as we do want anyones experience!.. including Phyll's!  The choice of doctors is a high emotional choice .. please dont assume any ill intent! ..

[mbnolde]

I have not logged on for a couple days, so did not know there was so much conversation.  I took no offense to anything anyone has said about their own personal experiences.  I want to gather as much information as I can BEFORE I have to make any treatment decisions involving surgery or radiation.  No, I am not limiting myself to Virginia...but if I can stay here and get what I need, that would be preferable for obvious reasons. 

In my internet ramblings, I found a site that offers free, on line responses from physicians re: choices and issues with AN.  It is www.cyberknifesupport.org  These docs are cyberknife and gamma knife specialists and are part of AN teams in their respective hospitals.  One of them gave a link to a place to find doctors in my area.  I have not checked it out yet, but will today. 

I really appreciate all the useful advice from everyone so far.  But I also do not want to dwell on this to an obsessive level....so I may not check my replies every day.  But I will check them, so please send any information you feel may be useful and I will check it out. 

Thanks, mb

[Erika]

I was diagnosed in July of this year and after a lot of research and soul searching, I'm going to have the middle fossa surgery on Jan. 3 at the House Clinic.  Lots of reasons for the decision, including financial (if I wait too much longer, I'll be on medicare and I don't know if they would pay for my going out of state and I have really good insurance now), emotional (I don't like living with this thing in my head, not knowing how quickly it will grow), and physically (I am in excellent health now--at 63 years old, I don't know how long that will last).  So, these are personal decisions.    I wish you luck in your decisions making process. 

[4cm in Pacific Northwest]

Welcome Erika,

Sorry for the reasons you have had to become a postie but I am sure happy to see you posting here with us now.

The great thing about this forum is you can still be in your PJ’s and having a bad hair day – and we don’t care about that we care about you. We are here if you need us.

You are heading to a very world renowned and reputable institution … and I am confident you will be in very good hands there. (Just take a suitcase of handy snacks as the food there – mmm...well it is not listed in any gourmet magazine I know of    … That and bottled water. The tap water in LA is the worst     – it will make you SO appreciative of the water back home) 

Also know that once back home there are people here who will be there to help you if you need it.

Keep moving forward!

4