Who decides on what kind of Surgery: Me?

[m4guzman]

Ok, so I have been reading this forum for about 1 week now - Non stop I should add.  And I finally decided I NEED to join. I was told on Feb 1st that I had a 1.5cm AN.  I have some hearing loss in my left ear. I am a 48 year old woman with four children ( 21, 18, 16, 12)  They do not know because 2 are in college and I want to tell them in person so that
they see that I am OK.  We are all close.  The words "brain tumor" are big and they need to see me to know that I am going to be OK.

OK so now - what to do. First I had to decide whether or not to have surgery or Gamma Knife.  This was a huge decision and I am still not 100 percent sure.  After talking
to several Drs from NY and after many sleepless nights I think I have decided to go the surgery route.  ( I just cant live
with thinking that I have something "dead" in my head.  I want closure.  Anyway, the several neurosurgeons and ENTs
that I saw all suggested different surgerys.  Now what do I do?  Should they decide or should I?

Anyone out there in the same position?

Marybeth

[Kathy M]

Hi Marybeth,

Usually, I don't reply quickly to questions because there are so many other people who have so much more knowledge and wisdom than I do, but your questions are so close to my heart that I'm chiming in early!

What people here told me after I was dianosed in November '08 with a large AN, was this:  research, read, don't settle for just one opinion, find out about the track record of the surgeon (how many of these surgeries has he/she performed in a year - actually, you can get a booklet from the ANA that provides a long list of questions to ask your doctor(s))....
...and after all that, make your informed decision and trust in yourself that you are making the best decision for you.

That's exactly what I did for 6 weeks following my diagnosis on 11/14/08.  I ended up with 3 opinions (2 recommended translab, 1 recommended retrosigmoid).  I asked some probing questions of each dr, read everything I could find, asked questions of folks here, and made my decision.  My surgery was 1/13/09 and I have absolutely no regrets.  The surgeons I went with had fabulous reputations, they were experienced, they built my confidence up in myself, they calmly answered all of my questions and even offered more information than I asked, and they were genuinely interested in my health and well-being  -  we "cliicked" right away.   It is a hard decision to make, but I was told that I would just "know" and they were right.   

I know you will get a lot of responses from terrific people who have been around in the AN world a lot longer than me!  Best of luck as you pursue the very best path customized just for you...and you WILL find it!

Take care,

Kathy

[Pooter]

Marybeth,

First, welcome to the forum and out from "lurker" status.  You can learn alot by just looking at the different threads, but one generally finds themselves wanting the answers to their specific questions..  So, welcome aboard!

Second, while I didn't have much of a choice is surgery versus radiation or for the approach for that matter, based on what I've seen the approach is decided upon by BOTH you and your surgeon.  Surgeon's tend to favor one approach over another and will "recommend" that approach given their own internal biases towards it.  Where YOU come into play is that you can investigate the different surgical approaches and determine one based on what's important to you.  For example, with Translab approach you are guaranteed to be SSD (single-sided deaf), whereas with a Retrosigmoid approach there's a theoretical chance of saving your hearing.  If that's important to you, then Translab is definitely not the approach to take.  Other methods such as the new endoscopic approach is less invasive and a theoretical higher chance at saving hearing, however that approach is newer so it's by default prone to a higher risk of other complications.

The doctor should tell you what approach he/she favors given the size and location of your exact tumor (along with his own experiences with multiple approaches).  If you want to have a Retrosigmoid surgery, but the doctor you're seeing favors Translab, then find a reputable doctor that favors Retrosigmoid.  At 1.5 cm, you have some time to make the decision that's best for you.  AN's typically grown 1-2 mm per year.  At 15mm, you'd have 5+ years before coming to the same size as mine or 20+ years before you'd reach the size of Jim's (estimated in both cases).  The point is that you have time to decide.  You shouldn't be in a rush.  This isn't going to kill you overnight or anything.

If you were given options for multiple surgical approaches, then it falls back onto you to decide based on priorties, lifestyle, preferences, etc.. which approach gives you the best avenue to achieve those goals.  For example, for me, hearing was of little consequence.  In Jenni's mind (who was with me during every doctor visit), and she even told the doctor, so long as we were assured that she'd need to buy TWO rocking chairs when she's old, then hearing preservation was a small factor in deciding which approach to use.  In fact, my surgeon switched from a Translab to Retrosigmoid with about 1 week to go before surgery after consulting with his partner over my particular case.  They felt that approach gave them the best chance, the best angle, to get all of my unique tumor.  It had nothing to do with hearing preservation attempts.

Everyone understands the initial shock of getting the news.  Most of us understand the quest for treatment choice, and everyone understands that choice of treatment is very personal.  Do what's best for you.  

Regards,
Brian

[Sue]

Hi Marybeth, welcome aboard.

First of all you can tell you kids that you have a "skull based" tumor, if you want.  It isn't "technically" a brain tumor as the tumor does not reside in or on the brain, per se.  Or you can say that you have a tumor growing on your vestibular/hearing nerve and that they have to go into your head to dig it out, if that sounds better than just saying, "I have a brain tumor!"  Maybe that will make you and your kids feel better. 

That's about all I can help with since I went the GK route and didn't have to face all the surgical questions.  Except I do suggest you read this article.  It's a great explanation of your balance system and what happens when things go awry. If you don't have some of this already, you probably will have some of these symptoms somewhere down the line. 

http://www.hearinglosshelp.com/articles/balancesystem.htm

Best of luck to you with your treatment and eventual recovery,

Sue in Vancouver USA

[wendysig]

Hi Marybeth and welcome.

Sorry to hear that you have an AN, but glad you found us.  I think you will find this forum to be a wonder source of information, compassion, understanding and a great place to vent.  It is also a good source of occasional comic relief. 

Regarding your question on who picks the type of surgery you will have, that is probably a decision you and your doc will make together, although some docs are more comfortable witih a particular approach and may recommend it for that reason.   I am not a doctor, but here is my two cents worth of advice.  Since your AN is on the small side, unless your hearing is really bad, you probably can choose any of the three approaches, it just depends on what your priorities are.  From what I've been told and read, middle fossa (insicion above the ear) is done in an attempt to preserve hearing and is probably the best approach for small ANs when hearing preservation is the goal.  There is a high possibility of temporary facial nerve dysfunction than with the other approaches though and not all surgeons do this surgery.   The translabryrinthine approach sacrifices hearing outright, but offers the lowest possibible risk  of facial nerve dysfunsion.  If you do not have useful hearing this would be the most logical choice.  If preserving your facial nerve is your priority,  this would be another reason to choose the translabyrinthine approach.  The incision is behind the affected ear.  Retrosigmoid is another approach where hearing preservation is attempted but my understanding is that it has a higher incidence of post-op headaches and slightly higher risk of CSF leaks --  you won't necessarily have them, the possibility is just a little higher they might  occur -  inciison behind the ear but futher back than translabyrinthine.  If you haven't already, you should discuss the pros and cons of all of the approaches with whomever you decide on.  He/she is the best one to advise you but you should have a good understanding of your choices and not be afraid to ask as many questions as you need to be comfortable with your choice.  Let us know how things go.

Best wishes,

Wendy

[Jim Scott]

Hello - and welcome, Marybeth ~

I'm pleased that you decided to join us although I wish you didn't have a reason to utilize this website, but here you are and we're happy to have you and respond to your questions as best we can.  Some knowledgeable people have already replied to you with fairly comprehensive information that should certainly help answer your question about who decides on the surgical procedure to remove the tumor, so I'll just throw in an observation or two that might add something  to the discussion.  I hope you'll bear with me.   

My neurosurgeon didn't really ask my opinion about the surgical procedure he would use because my AN was quite large (4.5 cm) and he was very concerned that it would do serious damage if left unchecked, so he scheduled my surgery for about 10 days away and told me what procedure he would use (retrosigmoid approach).  I had done some research and knew what that procedure was.  I trusted this surgeon (he had a great success rate with AN removals) and, frankly, I didn't see any reason to argue about his choice.  He explained that the 'retro' approach would give him the best 'window' on the tumor.  My hearing nerve was already irreparably damaged (I was SSD) so saving my hearing was not really a consideration, even though he mentioned that because the nerve would remain intact, a bit of my hearing might eventually return (it didn't). 

My suggestion is to continue your research and question a doctor as to why he chooses a specific surgical procedure.  If you're satisfied with the explanation and feel comfortable with the doctor, consider choosing him and undergoing that procedure.  Endoscopic is also worth considering.  This is a long-established surgical approach although one that is relatively new to AN removal.  It certainly seems promising.  This and other AN-related websites offer excellent diagrams and drawings of where the AN resides.  These might help explain it to your children and help them realize that you don't actually have a 'brain tumor', which is technically true, although, full disclosure would require you telling them that the surgeon will have to 'open up' a very small portion of your skull to get at the AN and remove it.  It's a serious operation but in the hands of an skilled surgeon working with an experienced surgical team, almost always successful.

I trust this will be of some small help to you as you go forth and choose a doctor and surgical procedure.  I wish you all the best in that quest. 

Jim

[Seal]

Hi Marybeth,

Welcome to the forum that nobody wants to join!     Now that you're in though, you'll find a wealth of information, especially if you want to do searches on partial applications.    I cannot add much to the great advice already given.     My situation is quite different from yours, but I thought it would give you some perspective.  I had several consultations with some really talented doctors, and they all came to the same conclusion that GK was not for me.   Surgery was my only option.     So for me, the decision was much easier than yours.    However I detect that you may just want to get this done and over with.   Your tumor sounds small, and I would only suggest that you do not rush into a decision until you have researched all the options.   At  1.5 cm, the AN is still small and you have the advantage of time.     My only comment is from my own experience.      I found that each surgeon was more favorable toward his own specialty rather than commenting or refering me to someone else.      So in the end, you will be the only one to decide who to go with and what that final procedure will be.     Good luck with your journey and your decision.     

Steve

[m4guzman]

Hi

You all have been so great!  I think as soon as you are diagnosed  with an AN the first thing they should tell you
is to go to this forum.  It is so informative and supportive.  Thank you so much.  Everyone has been great. 

I am meeting with Both Dr Golfinos and Dr Rolland next week to talk about which surgery is best.  I  will keep you
all posted.

marybeth

[sgerrard]

I think as soon as you are diagnosed  with an AN the first thing they should tell you is to go to this forum. 

I would have to agree with that. I'm glad you found us.

As for how to tell people, it is perfectly correct to say you have "a small benign tumor on your hearing nerve." You can decide yourself how much to tell them about what the surgery and recovery involves.

Steve

[moe]

Great advice from everyone and I ditto them all   Gee, no one told me about this forum when I was diagnosed with my AN. My situation was unique though, Now I have found it 2.5 years post AN surgery and I'm soaking it up too!
Glad you joined. Lots of great support, advice, chuckles.
Depending on my mood and how much sympathy I wanted on a particular day, I would alternate  between telling people I had a BRAIN TUMOR (lots of sympathy) or an acoustic neuroma, and then describe that. Yea, for your kids, just say there is a benign growth on your hearing/balance nerve. Or you can also tell  people "I have a vestibular schwannoma." (the old fashioned term).
Maureen

[leapyrtwins]

Marybeth -

obviously I can't speak for everyone, but my neurotologist gave me the choice of approach - translab or retrosigmoid.  I chose retrosigmoid because I had fairly decent hearing in my AN ear and decided it was worth it to at least try to save it.  Long story short, my hearing nerve was wrapped around my AN and it had to be "sacrificed" so I ended up SSD.  But I opted for a BAHA implant, so all's well that ends well.

BTW, Drs. Roland & Golfinos are excellent.  Good luck with your appointment.

Jan

[Vivian B.]

Hi Marybeth,

I have also been recently diagnosed with an 8mm acoustic neuroma. I am 46 with two kids 17 and 21. I will be going to see the surgeon on Tuesday. I just posted the same question. Who decides on the surgery and how do you know if it's the right one. I also feel the same way about the GK option as I think I would always be wondering if something is growing back. But the surgery scares me too. If it's any consollation, I am going through the same thing.

Vivian

[Debbi]

Hi MaryBeth-

Sorry to be a little late in welcoming you to the "group"!

Hey, I see that you are seeing Drs. Golfinos & Roland!  They did my translab surgery last April 30 and I cannot say enough good things about them both.  I had some damage to my facial nerve, so I still see Dr. Roland every couple of months - in fact, just saw him on Monday.  Both are great surgeons and great people.  Please tell them hi from Debbi Bifulco, okay

IN terms of the question of type of surgery - much of that is predicated on the location and size of the tumor.  I saw 3 sets of surgeons and all suggest that translab would be my best option because of the position of the tumor.  However, I did have a final discussion with Dr. Roland the day before to discuss possible retro - the deciding factor was that he did not believe that I had any chance of preserving hearing and because he suspected that the facial nerve was at least somewhat involved, translab afforded the best shot and minimizing facial paralisis.

I would be very happy to talk with you, if you wish - just send me a PM anytime and we can exchange phone numbers and set a time to talk.  Either way, you are in great hands.

Debbi