Am I making a mistake to simply accept that I will have hearing loss?

[TR4guy]

Hi,

First time poster on this forum.  Glad to have some other knowledgeable folks to talk to.

Statistics: 
40year old single male.   
Some hearing loss and ringing in right ear has been getting worse for about 5 years.
Occasional headaches (not often). 
After a plane ride home from a business trip, found myself to be having balance issues when moving my head. 

After a bunch of doctors and eventually an MRI.  Viola -   there's the problem.

3.5cm Acoustic Neuroma.

First Neurosurgeon at a local hospital - didn't like him at all.  He told me to "go to a center." 
When I asked what he meant he said "you know,  Georgetown, Hopkins, UVA...."  (all of which are fairly local to me here in the DC area)
Thanks doc.  Great work.

UVA = ruled out for insurance reasons.
Georgetown - liked the doctors I met with very much.  (Jean  and Kim)  Suggested Translabyrinth Approach.
Figured these would be the guys I'd go with.

Then I met with Doctors Tamargo and Carey at Johns Hopkins.
They have a significant amount more experience.  I'm guessing the folks there at Hopkins are second only to Long Ear in CA as far as experience goes.  (which Tamargo basically told me)


Tamargo and Carey didn't like the translabyrinthe.   They said mine was too big and that they'd rather have a lot more room to get to the sucker so they want to go suboccipital retrosigmoid.

In the end, I decided to go with Tamargo and Carey at Hopkins.  (Scheduled for Sept. 9th)

All the doctors said that radiation would initially cause some swelling and that'd be bad because I literally don't have the headroom for the tumor to swell.
So they didn't recommend that treatment.
Okay.  No problem.  I sorta figured that out ahead of time.

They also all said that there is essentially no chance for keeping my hearing.
That's understandable from the translabyrinthe approach of course, but the Hopkins guys acted like it was a done deal even though they were using retrosigmoid.

Given the fact that my hearing isn't too terribly bad right now . .. am I being too agreeable to just accept this conclusion?
I've seen a couple stories where people with large tumors were treated at Long Ear in CA and just had their tumors debulked and managed to keep some hearing and also avoided damage to the facial nerve. (which frightens me much more to be honest)

Am I being too trusting by just going with the Hopkins guys because "they are the best?" 

Thanks for letting me get this out.

Scott

[TR4guy]

Uhh . . . and for some reason,  I keep calling the House Ear Institute "Long Ear Institute"   

Can't seem to get that name through my head.
(Maybe because I have a tumor.... my new excuse for everything.   

Scott

[opp2]

Hey Kiddo, welcome to the club. Nice toomah! 3.5 is pretty darn large. Mine was 3cm by the time I had surgery July 6th, about 2.5 cm when diagnosed about 18 months earlier. The first 3 surgical teams I met with recommended translab for me. I had 90% speech discrimination, with some loss of tone at the level of human voice. (meaning I could hear pretty darn good for someone with a big AN). The last surgeons I consulted with said they would do retro sigmoid (one did them as a rule, the other said he would if I wanted. I wanted).

 Both methods are acceptable. Both will get rid of the tumour, both will preserve the facial nerve, which is a big deal with these tumours because it is so close. I'm afraid the decision is going to be yours and yours alone. And it won't be easy.

I chose to go a long distance (not to House, though I was at one time scheduled for surgery with them) to have retro. I wanted to try to save the physical hearing apparatus. It would have been nice to save the hearing, but I knew going it that was a long shot, but, someday, 20 years from now, there might be a way for me to hear again, so I want to have all the parts in order.

With that being said, I am now SSD and it is not nearly as traumatic as I thought it would be. And believe me, after suffering facial numbness for 2 years, having the feeling in my face again is like a miracle.

There are a number of very experiences, compassionate folks on here who can add their thought and best wishes. I hope it all works out for you, but we can't tell you what to do. I can say that I knew, when I met my surgeon, that he was the guy. I never looked back, no second guessing, and now, no regrets.

All the best.

Nikki

[Funnydream]

I'm still waiting on a surgery date. I'm told Retro approach to debulk and then CK to kill the rest. The Doctors both told me to forget about my hearing. But I gave them both a hard time about it. I have about 30% hearing left. They said about 10% chance to keep my hearing. Sad Panda.

The issue with Retro is 10% chance to have chronic head aches post-op for the rest of your life. Or until a fix is found.

[leapyrtwins]

Scott -

first and foremost, it's crucial to have faith and trust in your doctor or team of doctors.  IMO, if you didn't like the first doc you were very wise to steer clear of him.

As for your question, my answer is it depends on you.

I had the choice of radiation - you really don't with an AN of 3.5 cms - and surgery.  I ultimately chose surgery and my neurotologist left the approach up to me.  I picked retrosigmoid because I had decent (though diminished) hearing with good word recognition and I didn't want to just make SSD (single-sided deafness) a given by choosing translab.  I knew that the odds of saving my hearing with retrosigmoid weren't very good, but as I told my neurotologist, I wanted him and my neurosurgeon to at least try to save it.  I felt if they did their best and just couldn't save it, it just wasn't meant to be.

Long story, short, my AN was wrapped around my hearing nerve and it had to be "sacrificed" in order to remove my entire tumor.  My neurotologist felt just horrible about my hearing loss, but as I told him, he and the neurosurgeon did their best and that's all I expected.  If I had automatically let them take my hearing via the translab approach, I would have always wondered if it could have been saved.

This is my experience, you need to do what is right for you.

Being SSD isn't the end of the world.  Many people adapt.  For those of us who don't there are some options.  I chose the BAHA and I've never regretted that decision.  BAHAs rock!  

Best,

Jan

[Tod]

Scott,

Welcome to the forum. I'm sorry to hear about your diagnosis, but at least you have found a place here where folks understand and can help you find the information you need.

The docs actually planned to use two different routes to get at at my tumor. Translab and retro. In the end, I think they just used the translab approach. Given the size of your tumor and all the possibilities of the unforeseen that can't be determined by MRI, they may well just not want to get your hopes up. A set of images doesn't really tell them about the "quality" of the tumor - stickiness, blood supply, etc. I think you may just need to talk to them some more.

Also, you can send your images to House and they will do a free consult if you haven't done that yet. That may help you. When all the doctors were saying the same things to me, it made my action plan a lot easier.

Best,

Tod

[tenai98]

Hi Scott and welcome
I went with the translab as my hearing was pretty well lost before surgery..Only a little tiny piece of the tumor was removed to save my facial nerve..first dx at 1.4cm  at time of surgery 2.0cm...first MRI showed 1.6 cm and last one showed 1.3cm...so whether its dying on its own or not remains to be seen...All is in place for CK if and when it does decide to resurface its ugly head...
As others have stated, the decision is yours and yours only...we all have different symptons and different recoveries. 
As for being SSD, its really no big deal...I do have a BAHA but only wear it at work...I honestly do fine without it as well...Again that choice is up to you. Hearing device or not...
Best of luck and keep us informed...We do care
JO

[TR4guy]

Hi All,

Thanks for the responses.   This is very helpful (just communicating with others who have gone through it.  )

After years of gradual hearing loss, I sorta figured I'd be deaf in that ear before too long anyway . . . so the idea of losing the hearing in that ear never really disturbed me that much.
(Facial Paralysis is another story though . . .  probably tougher to get girls to go out with you when half your face doesn't move)

I sorta hoped that the doctors were setting my expectations low  (telling me there wasn't really any chance to save my hearing)
And that I would be pleasantly surprised if there was some hearing left.

They told me that even if I did get BAHA - that it would essentially be a microphone allowing my "good ear" to pick up sounds from the opposite side of my head.  (that there'd still be no hearing from the ear that was operated on)
Maybe it is the engineer in me . . . but I can't figure out how one is supposed to discriminate which direction a sound is coming from if all the sounds are being processed through one ear.

Anyway- back to the point.
Since I was resolved to hearing loss on that side anyway . . . and worried about other problems . .. I'm wondering if I just accepted that outcome too easily without doing some more searching around to see if someone out there was more willing to try and do more to save the hearing.  (as opposed to surgeons who follow the mantra of "getting all of that tumor out of there is the main thing we want to do."  (my words, not an actual quote.)

Scott

[grega]

Hi Scott, and welcome!

I also had retrosig at Hopkins, as I live a couple miles from the Bay Bridge .... see doc names at bottom of my post.  Have heard that Tamarko and Carey are also good choices.  I was never disappointed by Dr Brem's sincere attention to my situation from the start, and hope the others would also exhibit the same for you. 

My AN was smaller than yours, but I was prepared for losing hearing on the AN side ..... which did happen.  Also an engineer .... but I realized early on that, with whatever device I sought for trying to overcome my SSD, I would not be able to truly determine directionality.  I sometimes still turn my whole self when someone speaks or calls out, if I don't already know that person's location. 

Since mid-July, I've been using the BP100 BAHA sound processor, and I'm very pleasantly impressed at how it helps.  But no real help with directionality.

I wish you the best in your investigations and decision-making.

Greg

[texsooner]

Hi Scott and welcome. Your status sounds very much like mine from a couple of years ago (in fact 2 years ago today is when I had my AN surgery). My AN was also 3.5cm, and retrosigmoid was the type of surgery that my doctors recommended based on the location and size of the tumor. I also had lost a majority of my hearing on the AN side, so it was not so traumatic that I did end up losing all the hearing on that side. My doctors intentionally left a very small sliver of tumor on my facial nerve so as not to disturb it too much. I had slight facial weakness on the AN side for a short time, but that all cleared up.

I would not hesitate to use experienced doctors that are in your own back yard, such as Hopkins, as they have a very good reputation. I did the same here in the Houston area. I just wanted to pass along my success in what appears would be a similar surgery to yours, and I was a few years older (48) than you at the time. The surgery and recovery is no picnic, but the odds are, you'll come out fine like I did.

Good luck and keep us posted. 

Patrick

[TR4guy]

Hi Scott, and welcome!

I also had retrosig at Hopkins, as I live a couple miles from the Bay Bridge .... see doc names at bottom of my post.  Have heard that Tamarko and Carey are also good choices.  I was never disappointed by Dr Brem's sincere attention to my situation from the start, and hope the others would also exhibit the same for you. 

Thanks for the reply Greg

I believe Dr. Brem is the head honcho of the department and is who I submitted my information (MRI images and report) to.  So he is the one who assigned my case to Tamargo and Carey.  I wonder what all goes into his decision making process.    In any event, I feel confident in their abilities. 

Thank you again for the reply.  Would you mind if I contacted you more about your specific experience at Hopkins?

Scott

[leapyrtwins]

They told me that even if I did get BAHA - that it would essentially be a microphone allowing my "good ear" to pick up sounds from the opposite side of my head.  (that there'd still be no hearing from the ear that was operated on)
Maybe it is the engineer in me . . . but I can't figure out how one is supposed to discriminate which direction a sound is coming from if all the sounds are being processed through one ear.

Scott -

although BAHAs aren't known for their ability to give wearers directionality, this whole idea of "essentially a microphone" is NOT a good assessment of a BAHA. 

Lots of docs don't know what they are talking about when it comes to the BAHA.

I've worn one for over 2 years now - just upgraded my processor to the BP100 in April - and I can't say enough good things about it.  In fact, my great experience has led me to become a Cochlear volunteer where I tell just about anyone who will listen about how great the BAHA is.  I am also a BAHA wearer who has gained directionality over time - it CAN be done!

You should try the demo which is amazing - and then keep in the mind that "real" thing is even better 

Jan

[Jim Scott]

Hi, Scott ~

Thanks for your comprehensive post - and please accept my slightly belated welcome to the ANA discussion forums.

To respond to your question:  Obviously, the choice of treatment/doctors is entirely up to you - but because you asked, I'll submit that the Johns Hopkins doctors (Tamargo and Carey) seem to have impressed you and, as previous posters have stated, if you feel confident with these doctors, go with them and trust that they're acting in your best interest.  This is what I did with the doctor that I picked to perform my AN surgery. 

As my signature (below this post) indicates, I underwent retrosigmoid approach surgery to 'debulk' my large (4.5 cm) AN, then I underwent radiation (FSR).  Unfortunately for me, the long-growing (and long ignored) tumor had compromised my 8th cranial nerve to the point where my hearing had already been 'lost' in the affected ear (my left), so, hearing retention wasn't an option.  Even so, my neurosurgeon believed that utilizing the retrosigmoid approach would offer him the best access to the tumor, so he took that route and, along with the fact that the debulking surgery was successful, I never suffered from headaches, before or after the surgery.  That is not an anomaly these days.   I believe that surgical techniques for retrosigmoid approach AN surgery have evolved to the point where post-op headaches are becoming much less prevalent.  I'm pleased to add that I never suffered from facial paralysis, either.  I made it crystal clear to my very experienced neurosurgeon that facial mobility was a priority for me.  He completely agreed, brought in an out-of-town specialist to perform the nerve monitoring and deliberately planned to 'hollow out' the tumor and cut off it's blood supply, then have it radiated (FSR) 90 days later, giving me ample time to recover from the surgery (I was discharged from the hospital in 5 days, driving within 2 weeks, back to normal at 6 weeks or so).  This plan was successfully completed by early October, 2006 and now, almost 4 years later, I'm doing great.

Even though my hearing wasn't an issue, as it is for you, I would advise you to go with the surgeons at Johns Hopkins, as you planned.  However, House Ear Institute will give you a telephone consult if you send them your MRI scan.  Of course, their advice may conflict with what you've been given by Doctors Tamargo and Carey, so that could serve to make your decision more difficult.  You can see why we consider making a final decision on the form of treatment and the doctors who will perform a milestone in the 'AN journey'.  Still, you want to feel confident that you've 'covered all the bases' and not regret your final choice, after the fact.  Even so, it seems as if the doctors at Johns Hopkins would be your best option. 

Whatever you decide Scott, we'll support you and be your 'rooting section'. 

Jim           

[grega]

Scott, of course I don't mind if you contact me!  Use the PM method and I'll give my phone # in case you'd like to call.

Glad to help, as others would do similar.

Greg

[staypoz]

Hi, Scott.  If you haven't attended a local support group meeting already, you might want to attend the one scheduled in DC on September 11th.  There's usually a good representation from folks who have had their ANs treated in a variety of ways and at House, Hopkins, and elsewhere.  I think there is more detailed info about the meeting in the AN community section; if not, you can pm me for details if you'd like.

staypoz