Recent diagnosis - trying to decide what to do

[staypoz]

Hello Zinger 1905 and welcome.  If you live in the metro DC area, you should consider coming to one of the ANA support group meetings.  You'll have the opportunity to talk to folks who have had different treatments with both local doctors and doctors from HEI.  l   

One of the most important things you should ask of any of the doctors you are consulting is how many AN patients has s/he treated.

It's easy to get overwhelmed with information and what seems like conflicting expert advice.  This forum and the local support groups can be a real aid to you. 

staypoz 

[Kim Zingale]

Hi everyone,

I met with the dr. at Georgetown last week and told him what I'd learned from the folks at House. When I told him how the docs at House didn't think retrosigmoid was a good approach, he seemed a little surprised, and when I told him that I'd probably do translab, he sounded disappointed, like he wouldn't get to do the "fun" challenging surgery. This is the direct opposite of the reaction I got when I told the doc at House that I would try middle fossa - he seemed to think that translab would be the best way to go.

So now I am conflicted. I think I've also decided that I want to stay closer to home for the surgery, so that would mean going to Georgetown or Johns Hopkins. I feel like the doc at Georgetown would do a good job, but his reaction to my surgery-approach inclination was a little off-putting. I'm thinking about doing a consult at Hopkins to give me a third opinion about the approach that would be best, but it may also confuse things more (more options, etc.). I'm also planning to get another audiogram soon because I think my hearing may be getting worse, and if it is, then I might not be so wary of going translab.

Does anybody have any advice or anecdotal stories to share? When I talk to other people about it, they don't seem to understand the conflicting feelings that I'm having about the type of procedure to choose and who I want to have perform the surgery. I mean, I would LIKE to keep the hearing, but even doing the RS procedure isn't a guarantee of that, so I think either way I need to be prepared for SSD. At least with translab, I KNOW what is going to happen in regards to the hearing loss. I just really hate "unknowns." Always have. But then I feel bad that I might be "throwing my hearing away" by choosing translab, and then I feel kind of selfish because the hearing would be sacrificed for a better facial nerve result (hopefully), so then it would be worth it I think. Sorry for rambling

Kim

[Debbi]

Hi Kim-

Not sure how I missed this post originally - sorry about that!

I think that this is the hardest stage of the whole - the part where you hear seemingly conflicting medical opinions.  For while during my early days, there was some discusiion between my neurosurgeon and neurotologist as to whether retro sig or translab would be better.  And, like you, I was conflicted about the hearing versus facial nerve thing.  I ended up getting translab which turned out to be a very, very good decision for me since my tumor ended up be "very" sticky.  No way of knowing that until they get in there, of course.  The thing that tipped the scale for me was that the neurotologist felt that the chance of perserving my hearing with retro sig was so small that it didn't warrant the extra rsik to the facial nerve. (footnote - I did end up with facial paralysis, but it is healing and I look pretty good now.)

If you haven't already done this, ask the neurotologist (not the neurosurgeon) what he/she thinks the odds are for preserving usable hearing.  That may help you in making a decision.  Also, ask if they think the tumor is touching your facial nerve at all.  In my case, they knew that the facial nerve was at least a little stretched over the tumor, so that would increase the risk of damage during surgery, especially if they didn't have a clear look at the nerve (which they get in translab). 

And, yes, I'd definitely get another opinion, especially if you didn't feel totally comfortable with the doctor you already saw.  I consulted with three surgeons (including HEI) and it was the third one I picked - I knew right away that they were "the guys."  You'll know when you feel comfortable.

Debbi, cheering you on from NJ

[sgerrard]

Hi Kim,

Still not interested in CK, I see. 

It is not so unusual for a neurosurgeon to favor retrosigmoid, while the neurotologist favors translab. To each his own. Since the HEI doctor doesn't favor middle-fossa, it would seem that surgery to save your hearing is not likely. As he said, RS doesn't get at the canal very well, and your AN is small enough that much of it is probably in the canal. Unless they left some in there, you would likely lose your hearing with RS. The general feeling is that translab is less risky for facial nerve damage, although there are  cases of both approaches avoiding that problem - and cases of both approaches incurring it.

If you get a translab, I would find a surgeon who does a lot of translabs - more likely a neurotologist than a neurosurgeon. I'm sure there are some closer to home than House that you could contact, probably at Georgetown or Johns Hopkins. There is still no rush, so take your time to find the right doctor and the right procedure for you.

Steve

[NL]

Hi Kim,

These decisions are so tough. Even if you favor surgery over radiation, there are the types of decisions you're dealing with now - retro vs. translab, hearing vs. facial nerve, choice of surgical teams, etc. I can really identify with what you're feeling!

You've received lots of great info from everyone here already.  Whatever you chose will be what feels most right for you, all I can add is how I personally dealt with this decision.

I had a 1.6 cm left AN (1.9 at the time of surgery 6 mos. later) that was mostly located in the CP angle, with only a small portion in the internal auditory canal. I had 96% hearing, but was not a candidate for a middle fossa due to the location of the tumor.

I live in LA, so my first consultation was from a doctor at House - I'l just call him doctor #1. Doc #1 said translab, and would not even consider anything else. I was SO disappointed that he wouldn't even discuss saving my hearing.

I had a second consult at UCLA where a friend of mine had a retro, and six months later was doing fine. But I just wasn't comfortable with the number of surgeries they did compared to House.

I had been reading of other House docs from forum members, but didn't think I could go back to consult with a different doc at House. Turns out I was able to consult with two more doctors there. Doc #2 at House said he'd do a retro if the ABR test showed good activity of the hearing nerve, but when the results came back, it put my chances of hearing preservation at only 20%. He said in this case he'd prefer to do a translab.

I really wasn't comfortable having surgery without at least the attempt to save my hearing. Doc #3 put my chances at about 35% - still not great - but I felt more comfortable going into surgery with at least some chance. I had also researched others on the forum who had retros either with the same team or at House, and none had suffered any facial weakness, which was my other concern. I was lucky that I did not have a sticky tumor and they were able to remove it all. They were not able to save my hearing, but I had no other post op issues and recovered fairly quickly. I, personally, feel better that I went this route and my hearing nerve was preserved, even if the hearing never returns (which it probably won't). It's just what I needed to do to make myself feel comfortable.

It's great that you're doing your research and have lots of options.  I'm sure soon you'll find one that feels right for you.

Wishing you all the best in your decision-making,

Nancy L

[leapyrtwins]

It is not so unusual for a neurosurgeon to favor retrosigmoid, while the neurotologist favors translab.

I'm not sure these choices are specific to neurosurgeons and neurotologists.

My neurotologist gave me the choice of retrosigmoid or translab - after I decided that radiation (GK) wasn't for me.

The hearing in my AN ear was serviceable and my word recognition was very good.  I picked retrosigmoid because my feeling was if there was a chance my hearing could be saved, I wanted my surgeons to at least try to save it.  I knew that chances of keeping the hearing I had weren't great, but I felt if I picked translab I would always be wondering "what if?" 

Long story, short, I took a gamble and I lost.  My AN was wrapped around my hearing nerve and in order to completely remove it my hearing nerve was sacrificed.  My neurotologist felt horrible about this, but my feeling was - you did your best which is all anyone can reasonably ask for; sh*t happens; life goes on.   I had a BAHA implant and I don't regret one single part of my AN journey. 

Although I've read many, many times that retrosigmoid compromises the facial nerve and leads to damage, my facial nerve wasn't damaged.  I've also read that with retrosigmoid sometimes ANs can't be completely removed; this wasn't true in my case.  IMO you can hear all the odds in the world, but until they do or don't become your reality, they don't mean a whole lot.

My advice is do what you think is best for YOU.  Like Debbi said you'll "know" when you have the right docs for you.  I also believe you'll "know" when you make the right treatment decision.  Go with your gut.

Good luck,

Jan

[calimama]

Hi Kim,

The two surgeons who i talked to both recommended RS surgery for me 1. because of the location (in the CPA not the IAC), 2. I had functional hearing (about 70%). I was hoping very much to keep my hearing, but was warned that my chances were low (around 20%). I was told i had 10-15% chance of permanent facial paralysis (which was obvious a huge fear) and between 25-50% of temporary paralysis (although i didn't know how long "temporary" could be!!).

My hearing is gone, which i got over pretty fast as i had bigger problems... severe double vision and facial paralysis. I was told that the tumor was sticky (2% left behind) and the facial nerve was very stretched (i did not have any facial weakness prior to surgery). But on a brighter note, i had no lasting balance issues, no headaches, no serious complications.

My double vision has totally recovered (but i did not really notice improvement until after month 3, and it was totally fixed by month 5). I still have paralysis, but i am still hopeful for a recovery (some movement coming back in cheek at jawline).

Anyway, i think it helps to hear as many stories as you can. I hope you can get comfort on what is the best thing for you to do.

SSD is not the end of the world, but i hope you can avoid it. Good luck with your decision making. You will get there!

Trish

[MAlegant]

Hi there,
I would vote for the third opinion and than go with your instincts.  I got three opinions and they were pretty much all the same which was very good.  I went for the team that made me feel the most comfortable.  I have never regretted my decision.  Good luck, whatever you decide.
Marci

[sgk]

Hi zinger,  I was also recently diagnosed and it sounds like we live in the same area.  I have contacted Georgetown, but not met with them yet.  I have an appointment at J Hopkins in Dec.  I have also read about the House Ear clinic on this site but would prefer the east coast. However, I am willing to go to the best in treating acoustic neuroma.  I have a 1.9 cm AN.
I mostly read other peoples stories on the site and find it very helpful. 
sgk

[wendysig]

Hi Kim,
If you've had a drop in hearing it would be a good idea to have another audiogram.  When I first decided to have surgery, my hearing was good  -- 80% speech discrimination.  After going for several consultations both with radiation oncologists and surgrons, I settled on surgery with the first neurotologist I saw.  I had the most confidence in him and liked him on a personal level as well.  To me, he just exuded confidence and made me feel like I would be in the best hands possible. 

My neurotologist discussed all of the approaches with  me and suggested either  middle fossa or translab.  He told me retrosigmoid was not a good option because of the position of my AN (growing laterally in the IAC) and that with retrsigmoid, there was a good chance he would have to expose my inner ear, thereby destroying my hearing.  He also told me that if my biggest concern was for my facial nerve he wasn't' opposed to doing translab since it offers the best outcome for the facial nerve.  It sounds like you have very much the same problem.  Unfortunately for me, although we agreed upon middle fossa, before my suirgery I had two large drops in hearing (speech discrimination went down to 24%) and that settled that, he used the translab approach.   I have to stress, my doctor didn't push me one way or the other on my decision regarding  the approach he used -- he just told me my options.  You are young and pretty so don't feel embarrassed  or feel  selfish or ashamed if you  choose translab because it gives you your best shot at preserving your facial nerve over the possibility of  saving your hearing.   Many people do fine being SSD and BAHA or TransEar would certainly help.  Do get that next opinion -- it might provide the help in making your decision you hope for or it could just be another opinion.  Ultimately, you have to make the choice.   Just be sure that you make the decision that is RIGHT FORYOU -- no what a doctor or anyone else wants you to do.

Best wishes,
Wendy

[Kim Zingale]

Thanks, everybody. I have an appt at Hopkins tomorrow, and I'm optimistic that this will help me decide what to do. I appreciated hearing all of your stories - it's very helpful to know that I'm not alone in this.

Kim

[hannie]

Hi Kim

I'm sorry to hear of you diagnosis. How did you get on with your consultation?

I think you are in a similar position to me. I am 24 years old and have a 1.5cm AN in my left ear. My hearing is almost normal and i only have slight tinnitus and a feeling like my ears need to pop. I was diagnosed in Augist and like you ruled out GK (I am based in the UK and we don't have CK here). I'm still deciding between translab and middle fossa.

I am leaning towards having the translab as there is better outcomes for facial nerve preservation with the translab and that is my main concern regarding surgery. I had a CT scan this morning so that the doctors could check the bone density. They said that if it is too dense in the mastoid (?) it makes translab more difficult and in that case I might be better having the middle fossa. Maybe this is something you could ask your doctors about to help make your decision.

Best of luck to you

Hannie

[rkks]

Hi Kim,

Our 19 year old son was recently diagnosed (9-17-08) with a 10x9x7 mm AN.  Like you, we have ruled out radiation treatment and the 'wait & see' method.  After discussion with the House Ear Clinic in Los Angeles and a surgeon in Kansas City we found out about the Skull Base Institute and their minimally invasive endoscopic method to remove the tumor.  Our (son, dad & mom) 'gut feeling' is that this is the surgery for us. 

I am not here to push you in any direction, only you can decide what is best for you.  We only post this to let you know of this minimally invasive technique and offer that you may want to research this method.  Their website is www.skullbaseinstitute.com.  Incidentally, our son's surgery is scheduled  for Dec. 29, 2008 at the Skull Base Institute in Los Angeles.  If you like, we can keep you informed about the surgery.

Thank you.

Ron & Karen

[catlover]

Hello,
I think I am in the same situation as you are. My AN is 1,6 cm and I have perfect hearing on both my ears and my balance is also normal. I can agree with you when you write that it feels weird to go for a surgery where you end up with deafness on one ear. I feel exactly the same way! My doctors have suggested me the retosigmoid approach, but I'm beginning to worry about the fact that they won't get the whole AN away. I've heard on the forum that the retrosigmoid approach isn't so good when it comes to getting the whole AN out of the IAC canal. I don't know if it is true... I was very sure that the doctors would suggest the translab for me, but they didn't, so I wonder a lot about if it is the best approach. It is very important for me to get the whole AN away.

Best wishes,

Catlover

[Syl]

Catlover,

With my retrosig surgery, a tiny bit of the tumor was left behind to spare the facial nerve. Dr. said that it would very likely die off, as its blood supply was cut off. I am not worried about it growing back. If by any chance it does, I will have that baby zapped in a heartbeat.

Syl