Newbie with Small AN

[shimwayout]

Hi Folks:
First time posting......51 y/o active male, diagnosed with 3x4x6 mm intracanalicular AN by MRI, Dr. John LaFrentz, Huntsville AL......consulting with Drs. Weaver and Rivas at Vanderbilt on 12/14/16.  Progressive hearing loss following annual company physicals over past 3 years....loss of hearing at high frequency and tinnitus only symptoms at present, so feeling very fortunate.  No balance/facial nerve/headache issues right now.

Some questions for the veterans:
- Nuclear Engineer by degree and familiar with both photon (gamma) and proton beam therapy/treatment; any opinions/experience about either?
- Small AN and intracanalicular; middle fossa approach if surgery indicated?
- Desire to retain existing hearing, but facial nerve preservation and CSF leakage avoidance, headache avoidance greatest concerns due to need for continuity of employment; is radiation out?

All suggestions, prayers welcome... Thank you!

[ANSydney]

Hi shimwayout,

Welcome to the club that nobody wants to be a member of, but everyone is nice.

At 3x4x6 mm that's a small tumor. Your doctor will probably put you on observation. Of the radiosurgeries, Gamma Knife has the most experience and, from what I gather, the best outcomes. Radiosurgery appears to have the better outcome than microsurgery. However, in your case, at least initially, observation is probably the way to go.

How much is your hearing loss? Do you know your PTA and word discrimination scores?

[shimwayout]

ANSydney:
Many thanks for the prompt reply.  I do not yet have my exam scores from the ENT but should have them shortly.  Have you heard of any testimonies regarding Proton Therapy?  The ProCure center in Knoxville, TN is the closest to me and I've contacted them for some preliminary information.   I'm very familiar with the technology in theory (from undergraduate studies and an offer with IBA Molecular at the UF Proton Therapy Center in Jacksonville), but not as a patient....!

Other than the hearing loss and slight Tinnitus, I'm asymptomatic:  I'm an avid hiker and cyclist and practice martial arts with no ill effects.  My hope is that I can find an option that allows me to maintain as much of my activity as possible; my wife and I have 3 teenagers and we want to be able to keep up with them

Again, thanks for the prompt and kind response

[mac84]

Shimwayout,

I'll comment here because I'm your age, a fellow Alabamian and also see Dr. Rivas at Vanderbilt.  You can see my stats below but mine is around 1.4 cm and pretty stable. I run 20-25 miles every week and own my own business so consider myself as busy and active as other folks. Other than hearing loss in the affected ear and pretty loud tinnitus I really don't have any issues. I continue to watch and wait but get nervous during the 1 yr interval between MRI's.

I see Dr. Rivas every April the day after my MRI at Vanderbilt. We go over everything and if no changes he releases me for another year. I don't have any balance issues but maybe it's because the other ear slowly took over during my running every week.....who knows!

Good luck!
Cary

[shimwayout]

Citiview and mac84:

Many thanks for the quick responses; I just got copies of my occupational hearing exams over the past 10 yrs and it shows a step change in the right ear beginning in 2014 and getting progressively worse; don't know if that correlates with rate of tumor growth.  I'll try to obtain word recognition scores from my ENT before the Vandy visit, but at this point I'm not sure if that will have any bearing on their recommendation.  mac84, would like to hear more about your experience with Dr. Rivas and Vandy in general.  My wife is from Nashville and we have accommodations there if an extended stay is necessary.

Kind regards-
David

[ppg01080]

I had significant hearing loss with a small tumor. I chose to have the middle fossa surgery to try to preserve my hearing. I did lose my hearing and I'm scheduled for surgery this month for a BAHA implant. I'm 6 months post surgery and have no regrets.

[mac84]

Shim,

So far my experience has been very good w/ Rivas and everyone w/ Vandy. What I like is that they immediately took charge and you could tell that they know what they're doing. That being said, I'm not sure I'd have GK or Microsurgery there. Not because of a lack of confidence in general, just because they haven't done as much as other places. I wish I'd written the # down now because I don't remember it exactly. I just remember thinking at the time that wasn't the experience I'd trust. I did meet Dr. Thompson who chairs the department there and he was a class act. Really personable and someone you can talk to about all the issues as you make your decision. I do get the feeling that they lean toward surgery.

I am in Prattville so schedule my MRI's for 1PM on a Monday to give me time to drive up. Then my wife and I hit the town after checking into an Air BnB we like. Next morning I have a hearing test and meet w/ Rivas to take a look at the MRI pics. We look at each one...the one where I was diagnosed in 2014 and then any others. We inevitably talk about the difficulty of measuring exactly because of the irregular shape but have agreed so far that there has been essentially no growth. The only thing that was different April 2016 is that Dr. Rivas asked me if I'd considered a hearing aid for that ear to help deal w/ the tinnitus. I might ask about that again in April 2017 if I could "try one out" since my Blue Cross doesn't cover it.....that would be a hefty purchase!

Feel free to message me if you need additional. I'll give you my cell if you want.....always nice to talk to a fellow AN person. 

[shimwayout]

Thanks to all for the continued feedback, good to know others have walked this path before me and are kind enough to share their experiences.

ppg01080, do you mind sharing where you had your surgery and what additional outcomes you've experienced?  I suspected that middle fossa would be a prudent approach in my case based on reading (4 weeks of study so I'm an expert now  ) .  Glad to hear that you have no regrets.

mac84, thanks for the offer; I'll probably contact you this weekend.

Best regards-
David

[WhiskyJoe]

My AN is about the same size as yours.  (My MRI report says it's 8 x 4 x 5 mm.)  I'm also physically active and am in excellent health but for the AN.  My symptoms are tinnitus and hearing loss in the AN ear and a "buzzing" feeling in my head that comes and goes throughout the day.  (It's not vertigo, but it is some kind of equilibrium problem.) 

I spoke with two surgeons (one at House and one at the Univ. of Southern Cal.) and decided that I wanted to proceed with microsurgery and have the AN removed now while it's still small and while I have a better chance of preserving hearing.  I then read several articles that ANSydney cited, a couple of which discussed studies of the quality of life of patients after microsurgery and after radiosurgery.  I've since spoken with a radiosurgeon at the University of Virginia and have now decided to do nothing for the time and have another MRI and another audiogram in the spring to see how rapidly the AN is growing.  I'll then decide whether to pursue treatment or to continue to do nothing and observe.     

[ANSydney]

WhiskyJoe, judging by your size of 8 x 4 x 5 mm, a follow up MRI before starting the decision process is a good idea, which is backed up by doctors.

How long have you had the symptoms? It appears that growth is most early on and one article from 2006 has no growth after 4 years from diagnosis.

If you've had symptoms for a few years then the following could happen:
1) Regression. Not much of a chance, but about 10% of tumors do regress, in which case no (short term) treatment would be required.
2) Stable. The chance of this is about two-thirds. Given your size, if symptoms don't get too bad, observation may be recommended.
3) Small growth (up to 3 mm). Wait a bit longer or radiosurgery.
4) Rapid growth (greater than 3 mm). Radiosurgeons don't appear to like fast growing tumors and microsurgery may be the answer.

Of course, professional advice from both microsurgeons and radiosurgeons is needed for any particular case.

Not only size, but also growth rate, appears to be important.

[Citiview]

Here's a couple of papers

http://www.medscape.com/viewarticle/770620_1

http://thejns.org/doi/abs/10.3171/2012.6.FOCUS12144?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&#/doi/full/10.3171/2012.6.FOCUS12209

Some people think that having a small AN is easier. While it is fortunate to have all options available, it can be difficult to draw a line in the sand for oneself regarding treatment. The decision is left for the patient to decide and the ramifications of the decision making are huge. It's up to the individual to decide if hearing alone is an important enough issue to undergo the risks of surgery. If there are other factors involved perhaps the decision making becomes easier for some.

Happy weekend.

[WhiskyJoe]

ANSydney, in response to your question concerning how long I've had symptoms, I've have tinnitus in both ears for several years now.  (I attributed it to noise exposure in the Navy and didn't worry about it.)  I started noticing I was having real trouble hearing conversations several months ago.  My family noticed it, too, and started encouraging me (yelling at me) to get a hearing aid  I didn't notice my asymmetrical hearing loss until just a few months ago.  I complained to my doctor about it, which caused him to order an MRI of my brain. 

[shimwayout]

Howdy Folks:

Visited with Drs. Weaver and Rivas @ Vanderbilt on 12/14.  Based on discussions will wait until May 17 and re-examine (MRI and review).  Still asymptomatic w/w exception of hearing loss and tinnitus.  They ruled out middle fossa and retro sigmoid approaches, and advised against GKS or Proton therapy because of my age, and size and location of the tumor.   Dr. Rivas indicated that he has successfully removed  tumors through endoscopic procedure (2x) and that I may be a candidate as the time approaches.

Very pleased with the detailed responses, professionalism, and confidence of the two surgeons. 

WhiskyJoe, I am former (Nuclear) Navy as well.......


Cheers and Happy New Year to all

[mac84]

Shim,

Glad you liked Dr Rivas and sounds like you feel confident. I hadn't heard about his endoscopy experience...I'll ask him on 4/18 when I see him!

[sharonov]

Very interesting that he uses the endoscope.  When I first had my AN diagnosed, I contacted several doctors one of whom was Dr. Shahinian of the Skull Base Institute.  Other of the medical gurus in the field hated the very sound of his name, and at an ANA convention they absolutely blasted him.  He has since had his license revoked, but the whole concept of the endoscope did sound very good.  So maybe it was just that Shahinian wasn't.