Newly diagnosed

[Yorkiemom]

I was just diagnosed with an AN last week.  It is 5.2 x 4.6 mm.  My ENT referred me to Dr. Jeffery Vrabec at Baylor Medical in Houston.  I live about 3 hrs away in Louisiana.  I met with Dr. Vrabec yesterday.  I would just like to put out here some of the things he told me and see if anyone was told similar things and what their outcomes were.

My symptons began in August.  I woke up one morning and could barely hear out of my right ear.  What I could hear was very tinny like it was coming from a broken speaker.  That lasted a week and my hearing returned to normal.  But I was left with ringing in the ear.  That is what got me to the ENT and an eventual diagnosis.  Dr. Vrabec said that it was most unusual for my hearing to return, that once it goes it usually doesn't return.  That no matter if this thing stops growing or continues to grow, I can again awaken and my hearing might disappear and not come back.

The news that really disturbed me the most yesterday was that in his opinion because the tumor was located so close to the cochlea, that any surgery that might be done early while it is small to save what hearing I have, would in all likelyhood fail to save my hearing.  In his opinion that surgical option is out.  Also, in his opinion radiation to save my hearing would likely fail because the radiation would probably damage the cochlea (because it's so close) and I would still lose my hearing, just not as fast as with surgery.

Therefore his recommendation was to wait a year and get MRI's at 6 mos and 1 year to monitor growth.  If it is growing, he recommended to take it out surgically, the surgery behind the ear where you know you are going to lose your hearing.  Although he said I could wait awhile on surgery since in his opinion I will lose my hearing anyway.  By waiting and watching, I will keep my hearing the longest.

Has anyone else had a AN near the cochlea?

I was more hoping for better news, especially about keeping my hearing.  This is all so overwhelming.  If I survived Hurricane Rita, I know I can get through this, but it is a little too much for me to handle right now.  Any recommendations or thoughts would be appreciated.

This is a great site!!

Yorkiemom

[ppearl214]

Hi Yorkiemom and welcome... you'll find this to definately be a great site and sooooo informative. The support and information I have gathered here is amazing.

Like you, mine is on the smaller size (slightly bigger than your's) and I've been in "wait/hold" mode since last year.  Now, since mine has grown, it is now decision time for me.  My cochlea is not affected so I cannot give you any insight into that, but I can share this... please try to get as many professional opinions as you can.  I've spoken to a few surgeons... you know, they all love to cut.... I'm now researching radiation (radiosurgery) as an option as well. I am finding that the more I am informed, it is helping me to become less confused (as well as everyone's support here... they are truly amazing!)

Will watch this thread for other's inputs as many here have already been through many of the procedures and since many here know I'm in decision time now, will love to hear their thoughts as well.

Hang tough... we are all in this together... you've come to a wonderful place here.

Phyllis

[David707]

Hi Yorkiemon,

Dr. Vrabec happens to be my doctor as well.  He and Dr. Trask did a very sucessful surgery for me about one year ago; i.e., in Jan'05.  I have been doing extremly well since then.  Even though I have very high respect to Dr. Vrabec, I would agree with Phyllis that you should try to get as many professional opinions as you can.  Especially, your AN is still small and you have a concern about your hearing. 

After my first visit to Dr. Vrabec, I also sent my MRI to Johns Hopkins Medicine Stereotactic Radiosurgery center for free consultation.  If you like, you can contact Tammy Cuda at 410-614-2886 or visit their website at

www.hopkinsmedicine.org/radiosurgery

A lot friends on this forum also had very successful surgery with the House of Ear in CA.  If I am not mistaken, you can also contact them for free consultation.  Hope someone else can provide you the contact information.

Take care.  You will be fine like many of us.  Best wishes for you.

David

[Boppie]

Hi, Dr. Vrabec is my surgeon.  I respect his forthright and gentle manner.  I respect his opinions completely.  I have many other posts on the An Forum and if you care to read them and have any questions to ask me I'd be happy to write back. 

[Yorkiemom]

Thanks, I really appreciate the responses.  I didn't have a clue about how to go about finding and consulting different doctors.  Does anyone have any links to consultations with doctors that specialize in the radiosurgery?

I would also appreciate hearing from anyone that was told their tumor was close to their cochlea and how it was treated.

Thansk a bunch, please keep coming with advice.

Yorkiemom

[flagger]

You will be alright!  I can still recall how much these words meant to me back in 2000 when my AN was first diagnosed. It was a scary time that I frankly have put behind me. I was told pretty much the same thing by the first doc that specialized in AN surgery but that there was a 5% chance of saving my hearing in that ear.  MY AN was 2.1CC, much larger.  After stressful investigation (and reading posts)I decided to use the stereotactic radio surgery (radiation).  I had 28 daily treatments in Philadelphia (Dr D. Andrews).  Prior to the treatments I had lost abut 40 % of my hearing on that side after 5 years I still have about 40% and aside from having to turn my head  with my good ear to the speaker in noisy places like a restaurant, I am just fine.  The only short term side effect that I had was headaches for the first 6 months that then disappeared completely.  I now see my doc only every 2 years for updated MRI and he has encouraged me to share my story for others to have courage.  I am sorry it has taken me this long to return to say thanks to those who gave me support and to offer encouragement to those of you who are just starting down this path.  I just went on with my life and am the same person I was before discovering the AN.  It shrank regularly from 1 year to 5.  Nov of 06 it will be 6 years.  Do not worry, you will be fine but I encourage you to explore all options.  I am so glad that I chose the radiation and have just moved on with life.  Best of luck to you.  K

[ppearl214]

Thanks, I really appreciate the responses.  I didn't have a clue about how to go about finding and consulting different doctors.  Does anyone have any links to consultations with doctors that specialize in the radiosurgery?

I would also appreciate hearing from anyone that was told their tumor was close to their cochlea and how it was treated.

Thansk a bunch, please keep coming with advice.

Yorkiemom

Hi Yorkimom (btw, I'm a pug mom!):

I am now researching radiosurgery as we speak.  I am not sure about treatments out your way, but I am researching locally at Beth Israel/Deaconess in Boston (this is their website with phone:  http://www.bidmc.harvard.edu/display.asp?node_id=6815). 

I know Mark, here on the forum board, is highly knowledgeable of radiosurgery and procedures and if you look at the "Radiosurgery" discussion board here, you will see posts by him with many links about descriptions of different kinds of radiosurgery procedures and pros/cons to them.  I found the links to be most helpful to me as I research this myself.  Here is one great link he provided noting the different kinds of radiosurgery procedures here:  http://anausa.org/forum/index.php?topic=783.0. 

We're here for you... hang in there!

Phyllis

[Sanddollar]

Yorkiemom,

I concur with Flagger and David707 - you will be alright and you have time to explore your options.  Making a treatment decision is by far the most stressful part of an AN diagnosis, but when you choose a path that fits your situation, I think you will find some peace.  

The good news is that you have been given a good referral for starters.  I am also a patient of Dr. Vrabec and have always felt that he presented all of the treatment options, did not sugar-coat potential outcomes and did not over-promise on results.  I have immense respect for both he and Dr. Trask, his surgical partner.  

You will find as you read the various posts that people have had success with both microsurgery and radiation or are pleased with "wait and see".    You will also find that those who feel that they made an informed choice and teamed with experienced doctors with whom they are comfortable and can communicate are generally more at ease with their situation.  

All the best to you.  Please don't hesitate to send me a personal message if you want additional information about my AN experience.

Regards,

Sanddollar

[sally]

Hi Yorkiemom,
I've been told that my AN is located in the IAC and cochlea and that yes, surgery would result in my loosing all hearing in that ear.
I'm going for a consult with another dr. to find out if radiosurgery would preserve what hearing I have left. (I'm researching CK).
sally

[Yorkiemom]

Thanks Sally.  Not sure what IAC is, but he said mine was near the cochlea, not in it.  Don't know if that makes much difference.  I could actually see it next to it on the MRI.  Would appreciate any links or info you find about CK.

Yorkiemom

[Mark]

Yorkiemom,

I believe IAC refers to the internal auditory canal where most AN's generally start and the 8th and 9th cranial nerves lie adjacent.

Links to Cyberknife

http://www.cyberknifesupport.org/

http://www.cksociety.org/

http://www.accuray.com/

mark

[Yorkiemom]

Mark, thanks for the links.  Will definitely check them out.  You seem to be very well versed in radiation treatments.  Do you have any information on damage to the cochlea from radation treatments and what that means long term after various types of treatment?  I ask that because that was the reason the surgeon gave for telling me he did not think radiation will work.  I am definitely going to get a second opinion from a radiation specialist, but I was just curious if you knew anything about damage to that particular structure.

Yorkiemom

[ppearl214]

Hi Yorkiemom,

Yes, IAC is Internal Auditory Canal... that is where mine is located as well.  My MRI scans showed that the cochlea is not affected for me.  Mark has wonderful source info/links for CK that I have found to be very very helpful to me. I've also consulted with House Clinic/Dr. Brackmann (I've sent my MRI CD to him for review) and he was also very insightful as to the surgical approach he would recommend for me.  In decision process now and weighing all options and potential outcomes.  Ask anything and everything you can without O.D'ing on research.  You've taken wonderful first steps by asking and we're all here to help support you and provide any info we can.

Hang in there... you've got great company/support.

Phyllis

[Mark]

Yorkiemom,

I have never heard or read a concern about radiosurgery damaging the cochlea area.  In my mind , given the 1 mm accuracy of CK or frame based machines I would make the assumption that the amount of radiation that would hit that area would be much less than the facial and hearing nerves which are typically involved with the tumor. Again, I'm not knowledgeable in this area but I would also assume that the two cranial nerves, especially the hearing with it's hair like fibers would be more sensitive structures. So in my round about logic, given the high preservation rates with radiosurgery for function of those two nerves which I am guessing to be more sensitive than the cochlea and receive a more direct "hit" , it would be hard to see why the cochlea would have the negative results your surgeon suggests.

Again, this is just my thought process in the absence of specifc reference to the cochlea in any studies I have seen. I guess it is possible that the surgeon is lumping in the cochlea damage issue with the hearing nerve and referring to overall long term hearing preservation rates. To that end I think there are a number of studies that address hearing preservation over various periods of time

Mark

[targa72e]

Hi all.

In looking at radiation studies the distance from the tumor to other structures has a effect. I posted the whole abstract from pub med in another thread.

"The maximum radiotherapy dose delivered to the cochlear nucleus was the single, significant prognostic factor of hearing deterioration"

This was in a GK study. The damage to nerves appears to be a little greater when the tumor is confined to the IAC as every thing is in close proximity to tumor center. Just my opinion from several studies I have read that were specifict to small tumors.

john

5mmx5mm