Small AN - deep in canal - options

[another NY postie]

This is my first post. I was just diagnosed two weeks ago with a 5mm AN.  I have some hearing loss already, fullness, on and off infrequent ringing, and some facial tingling.  I think this is due to how deep it is in my canal.

I have seen three NYC specialist so far: Dr Post/Mt. Sinai, Dr. Choe/Mt. Sinai, and Dr. Selesnick/Cornell.  My tumor is small by AN standards but deep in canal.  Dr. Post gave me 70% of hearing preservation and Dr. Selesnick said 50%.  I have appt with Golfinos/Roland also and I am planning on consulting House. 

I have two questions.  First, anyone who has had surgery for a small AN, what made you choose surgery over watch/wait?  Did you preserve hearing?

Second, I just read the following:
The middle fossa approach is used for tumors typically less than 2 cm in greatest dimension, where hearing conservation is to be attempted. This approach has the advantage over the retrosigmoid approach in its direct access to the lateral end of the internal auditory canal. Multiple reports have shown that the retrosigmoid approach cannot reach the lateral end of the internal auditory canal without violating the posterior semicircular canal, and hence destroying the hearing.

I am assuming that mine is in the lateral end since they all told me it was deep in canal (something I will verify this week at next consult).  East coast/NYC seem to say retrosigmoid so this now has me wondering.  Anyone with a small tumor that is deep in canal?

Thanks!

PS.  I have been reading your forums/chats since I first googled what in the world an acoustic neuroma was. It has been such a resource for me.

[Dog Lover]

Hi. I had a small 9mm AN in my IAC, and I chose surgery for several reasons. I wanted it gone. I wanted to preserve my hearing. I wanted it out while it was small and to hopefully decrease any complications from a larger AN.

I had a mid-fossa. Dr. Gantz said that was the best approach for me and for saving my hearing. Had my surgery 10 months ago. No complications. Hearing was saved (although I do have decreased hearing in that ear, I did before the surgery, too).

Good luck with your research. Any questions, feel free to PM.

Cathy

[wcrimi]

Welcome. 

I would ask the doctors about this when you do further consultations.  However, if Post and Selesnick are quoting fairly high hearing retention figures (which IMHO tend to be slightly conservative because the doctors are conservative), then I think they must be fairly confident they can get to it using retro.  I don't know much about mid fossa, but in one of my consultations I seem to recall that it raises the probability of hearing retrention, but also raises the risk of facial problems.  Please verify that though.

Wayne

[Darlene]

Hi
So sorry that you have to have this diagnosis.  Welcome to the site. 

I am in NJ and am having surgery next week with Dr Roland/Golfinos for a small 1.4cm Intracanicular AN.  MY tumor is located close to the cochlea however my speech discrimination is still 92% so I have pretty good hearing.  Dr. Roland suggested mid-fossa to try and preserve my hearing. If my speech discrimination was less than 70% he would not recommend it and would have waited till my hearing was gone or my AN grew significantly and then preformed translab.   He gave me a 50/50 chance of saving my hearing.  From my research it seems that your hearing will stay the same following surgery, of course allowing for normal decline (every person gets).  Facial Nerve is an issue with middle-fossa 5% risk of permanent damage, 15% temporary but does allow a good view and a better chance of hearing preservation. 
 IMO I think it is best to go with the surgery your surgeon feels most comfortable performing whether retro or middle fossa. I believe it is their skill which will ultimately determine the outcome and of course how sticky your AN is to your nerves.  I will post my outcome for hearing preservation and facial nerve after surgery so you have more data to support your research. 

Best wishes for success in your research and as you determine your next step.

Darlene

[another NY postie]

Thanks!  I think that surgeons do what they know well and have success with - so that is probably why I am not seeing to much Middle Fosa on East coast.  I have an appt with Roland on the 17th.  Dr. Post said he doesn't like Middle Fosa because it puts the facial nerve between the surgeon and the tumor.  So I don't know if that means that if I had Middle Fosa, I would have a higher risk of facial nerve damage.  It seems like every option has big Pros and big Cons to it.  Makes me wonder how you ever make an informed choice - it is all a gamble.

What is IMHO and IMO?
Thanks!
Cheryl

[CHD63]

Cheryl .....

Only because I have kids who text all of the time    do I know what these mean ......  IMHO, in my humble opinion and IMO, in my opinion.   

Clarice

[another NY postie]

too funny, Clarice....we were just talking about what a neophyte I m with texting...I have a 13 yr old too!  I just started texting two weeks ago because she doesn't seem to answer the cell!  I thought LOL meant lots of love for quite some time

[leapyrtwins]

Cheryl -

you should schedule a consultation with Drs. Roland & Golfinos in NYC.

Jan

[another NY postie]

I happened to have scheduled them today.  They seem to be a longer wait but I am seeing one on the 17th and one on the 28th.  I am glad that they do middle fosa approach too...I was beginning to think that only CA did that.

[Darlene]

Cheryl,

In my opionion, you are right, ulitmately it is a gamble but you have to weigh the risks for your particular circumstance. In my research for me,  Middle Fossa- slightly higher facial nerve risk, retro- little higher incidence of headaches, translab- supposedly an easier surgery technically but you lose your hearing and a tiny bit higher chance of CSF leak than with middle fossa, conversely middle fossa- better hearing preservation, retro- less chance of facial nerve damage, translab-less intricate surgery- most commonly used. Please keep in mind these are my interpertations of the research.   I decided to go for the gamble and try for the trifecta- removal of AN, no facial nerve damage and hearing preservation.  So I elected middle fossa with doctors that came highly recommended from many areas including this site. My thoughts are as long as you choose an experienced person  and you are comfortable with them and their approach that is the best you can do.  It also doesn't hurt if they take your insurance!  There are no guarantees and until they get inside your head and see how the AN has attached itself  to your nerve the statistics are just that, statistics.  Those statistics are very different when it is your reality.
 You are doing a great job in your research, keep going till you feel comfortable!   Good luck, Darlene

[ppearl214]

Hi Cheryl and welcome. Glad you found us and glad to hear that the forums are becoming a terrific resource for you.

Like you and Cathy (DogLover), mine was also, at time of diagnosis, 9mm deep in the IAC with just a hint poking out at the CP Angle Region.  I opted for radio-surgery (radiation) for mine, with the key point of my radio research being... was there enough room in the IAC for the growth to swell, which can occur during post-radiation.  My docs told me yes... and now, over 3 yrs later (post-radio), the AN is now a "done deal".

When I was researching surgical and radio treatment options, my brain surgeon, when noting to her about Mid-Fossa, actually cringed when she heard me say it. Now, it has worked out for many... and has not.  I have to also agree with you about the NE Region "poo-pooing" Mid-Fossa surgical approach and I have no clue why.  I did not ask my dr to elaborate on her attitude about it, since our conversation then shifted to radio-treatments.

The teams you are seeing in NYC are very reputable and you are doing everything right... we are here to help in any way that we can and again, send you "Welcome" to the forums.

Hang tough!
Phyl

[leapyrtwins]

I happened to have scheduled them today.  They seem to be a longer wait but I am seeing one on the 17th and one on the 28th.

Glad to hear it.  IMO, they are among the best in your area, which is probably why there was a longer wait to see them.

Lots of satisifed AN patients.

Hope your appointment goes well.

Jan

[wcrimi]

The good news is that if you allow Post to do Retro, he is still giving you a 70% chance of hearing retention.  That's the probability he gave me and I came out of it with about 90% of my hearing.  I can't even notice the difference except when I use a phone. The bad ear is very slightly distorted during phone use. I guess I was very very lucky, but it can happen.

When I saw Galfinos and he mentioned Mid Fossa approach and the extra risk of facial nerve damage. I went for the retro. But everyone has to make that risk reward judgement for themselves.

[leapyrtwins]

In general chances of preserving hearing with retrosigmoid are 50/50.  70 seems kinds of high.

Just remember that no doctor can guarantee you anything 100%.

Jan 

[Patrick-OC]

This is my first post too.
I had surgery to remove a 5mm AN located in the IAC on June 30, 2009 in LA at the House Ear Clinic.
I am originally from NY and now live in TX.
I opted for surgery to get this thing out of my head so i would not have to worry about it anymore.
My surgery was a great success. I opted for Middle Fossa surgery because it is less intrusive than retro.
It offered me an option to possibly retain some hearing as well.
The results were awesome! The entire tumor has been removed. I have balance issues currently but they are getting better every day. I was able to save some hearing which is great because i was prepared to lose it all. I had some headaches for a couple of weeks. I am in physical therapy.
I learned a lot from the ANA site and from attending the ANA support group in Dallas.
All said, it was 5 months almost to the day from the time i found out about the tumor until its removal.
I feel blessed every day that i am upright.
My doctor is Dr. Brackmann. I chose him because he has performed many hundreds of these procedures while other doctors that i spoke to had only done a few. The support group in Dallas was insistant on getting someone with major amounts of experience.
I am home now, doing physical therapy twice a week and expect to be able to return to work towards the end of August.
Balance is the biggest issue with me right now. My right eye no longer tears but it stays wet enough that i don't need eye drops at all.
Let me know if there is any other information that i can offer you.