Looking for NE contacts

[Debbi]

HI Steve-

Just wanted to give you a welcome and add a few comments.  Like Brian said, size isn't necessarily an indicator of symptoms.  My AN was 2.4 when I had it removed and the only symptoms I had were some hearing loss in the AN ear, and some balance issues (which I mistakenly attributed to being 52 - ha!).  Others with small tumors have had far worse symptoms and some with larger tumors, far less symptoms.  Really has to do with location, location, location.  

Also, as Kay said, facial nerve damage is more likely if the tumor is "sticky".  My surgical report described the tumor as "very sticky" (I guess that is a highly technical medical measurement  ) and I did have pretty severe facial paralysis initially.  At 8 months post op, my smile is almost back to normal.  The surgeons should have nerve monitoring set up during surgery which allows them to know if they are stressing the facial nerve.  One more reason to make sure you have a treatment team with LOTS of AN experience!

Doesn't sound like you will need to travel too far from home to find a good treatment team, but if you find yourself needing to travel as far as NYC, I can recommend the Golfinos/Roland team at NYU; and there are several other highly experienced medical teams in NY also.  You are in a good part of the country for this - oh, what I can't believe I just said that!  

Let us know what you learn.

Debbi

[Seal]

Hi Brian,

Thanks again for the feedback.  With retrosig, did you loose all hearing or was any of it saved?    As Kaybo points out, Jim had an interesting approach in his situation that seemed to work out favorably in terms of minimizing additional nerve damage.    He didn't mention hearing, but I will hold out hope that at least some of it returns.     I went from no symptoms at Christmas time to full blown symptoms now, including 100% hearing loss on my right side.    That seems to be a very short period of time.  

Which of the surgical removals requires the smallest incision?     Some pictures of the big "C" cut in back of the ear is quite frankly pretty scary.    But then again as you probably say in Texas, let's get 'er done!     So I'm trying to keep the full court press on a move along as quickly as possible to a decision on the appropriate process.  

Jim, I just read your late addition as well.  I was wondering about your hearing, and that's damn shame to loose it completely.   I'm just hoping that I didn't wait too long as well.  I've probably had this for 2-3 years since I remember having a period of imbalance and slight hearing loss after a biking accident that took me about 8 months for recovery (broken shoulder blade, ribs, etc).       The balance came back when I was back training hard on the bike, and so like you, I just brushed it off.    This time, I knew something was wrong with these symptoms coming on so strongly and immediately.      I look forward to meeting Dr. Goodrich soon along with others.       

Have a great weekend everyone,
Steve

[Rivergirl]

Hi Seal,
I am a New Englander, located in NH.  I go to Mass Eye and Ear, Dr. McKenna (which many of us are patients of his).  If you have surgery, they team up with Mass General, both excellent places.  I have been in watch and wait since July and doing research since.  I still don't know what I will choose for treatment but I do know for my size AN my symptoms are not good.  I wish there was a simple answer but it is just not that cut and dry when you talk about the head.  I know AN's are space occupying lesions and there is relatively no space in the brain for any weird growth, all space is accounted for so they do cause a ruckus no matter what size. Good luck with your journey and decisions and definately come to New England brunch, it really is fun and validating to be around people who know what you are going through.

[krbonner]

Welcome to the forum.  If you can make it to one of the Worcester brunches, I highly recommend it.  I went to my first one a couple months before my surgery it was so reassuring to meet everyone and talk to others who'd been in my shoes.

I had surgery in Sept 2006 through Mass Eye & Ear/Mass General in Boston for a 2.3cm AN.  There are also several options in the Boston/NE area for treatment with radiosurgery in addition to MGH.  My kids were 4 and 1 at the time of my surgery (now almost 7, almost 4, and #3 on the way!) so I totally get your concern about being there for your kids.  My personal story is that I lost all hearing on the AN side with the surgery (it was 90% gone pre-op and I chose translab so I knew I'd be deaf coming out), but otherwise have no residual effects.  I sometimes lose my balance if I'm exceptionally tired, or if one of my sons comes barreling into me!     I have had no facial nerve damage (though I'll notice slight tingling if I let myself get overtired - I think of it as my early warning system that I need sleep!). 

My understanding is that's it's very unusual to recover hearing that's been lost, unfortunately.  Though I can hope that I'm wrong.  Balance is easier to recover because your other vestibular nerve and brain will work quite well together to compensate for what's been lost so that many people feel no different.  That's how it is for me.

Of course, as everyone will tell you, no one can make any guarantees about what will happen to you - either positive or negative.  Your job is to do thorough research and make a decision about treatment (including whether or not watch-and-wait is a good option) that's right for you.  The rest is out of your hands.

Good luck!  Keep asking questions!

Katie

[sgerrard]

He didn't mention hearing, but I will hold out hope that at least some of it returns. I went from no symptoms at Christmas time to full blown symptoms now, including 100% hearing loss on my right side. Which of the surgical removals requires the smallest incision?

Hi Steve, and welcome to the forum. As I live in the Pacific NW, I am no help on NE doctors.

In answer to a question Brian raised about why is hearing so sensitive, I will relate a little of a discussion on the subject with my ENT. First, hearing is a sensory nerve, which are more sensitive to damage than motor nerves like the facial nerve. They tend not to grow back or reconnect once they are harmed. Hearing is also sensitive because of blood flow to the little hair cells in the cochlea, the key to hearing in the first place. Any disruption can lead to hair cell death and loss of cochlear function, so you can be deaf even with a perfectly good hearing nerve. The blood vessel for the inner ear passes through the IAC canal, along with all those nerves, and is often hijacked by the AN, as well as getting squeezed by it. They don't call it an acoustic nueroma for nothing.

In general, if you have lost 100% in the AN ear, you are unlikely to get back anything useable, if anything at all. If it was a sudden hearing loss, you might ask a doctor if a steroid treatment right now has any chance of restoring some hearing, before you do anything else.

Facial nerve preservation then becomes the main objective. Surgery has the advantage of also taking out the AN side balance nerve, so you just have to adjust to working with one good nerve. The other option is radiation, which has a low incidence of facial nerve issues, and those are usually temporary ones arising from swelling in the following months. It doesn't take out the balance nerve, though, and sometimes people have trouble with a leftover dysfunctional nerve. At 2.4 cm, you also have to consider possible swelling issues with respect to the brain stem itself.

So you might end up with one of those "C" shaped incisions yourself. They look impressively scary at first, but by all accounts, they heal right up and vanish from sight pretty quickly. Not really anything to worry about. I like Katie's last line - do your research, make a decision, and then accept that at that point, it is out of your hands.

Steve

[leapyrtwins]

Hi, Steve and welcome.

I'm not in the Northeast, I'm fairly close to Chicago, but I did have retrosigmoid.  I lost all the hearing in my AN ear though, and am now SSD (single-sided deaf).  I had a BAHA implant nine months after my AN surgery, and it's been a big help.

All the advice you've received so far is excellent - I can't really think of anything to add.  However, I would like to suggest that you contact the ANA and ask for their informational brochures - very good and very simply written and easy to understand.

Good luck and don't hesitate to ask us anything,

Jan

Oops!  Forgot to say that my retrosigmoid scar is very close to my ear and became very faint about 8 - 9 months post op.  If you didn't know I had brain surgery, you'd never notice the scar. 

[Joef]

Oops!  Forgot to say that my retrosigmoid scar is very close to my ear and became very faint about 8 - 9 months post op.  If you didn't know I had brain surgery, you'd never notice the scar. 

I second that ... its easy to get caught up on worry about scar size , where it was, my hearing .. forget it about it !!!... you cant see mine at all now! I do have a bald spot for the BAHA hearing aid, but frankly ... I dont care.. I feel the same it not better than before this all happened .. and thats want really counts... whats important is getting the right doctor... the right surgery....

[leapyrtwins]

whats important is getting the right doctor... the right surgery....

Steve -

this point can't be stressed enough.  Do your research and find the best doctor you can.  Experience is key.

Jan

[Seal]

HI all,

You people are great, especially reading some of the other's who are having much more stress at the moment than I am.     This has been way more support than I ever expected to receive or witness.   Thanks.     

My one question this evening is about facial nerves.     I have control over my muscles to smile, etc, but I have no surface feeling on the right side of my face, nor in my mouth or throat.     Is this a seperate nerve from the auditory nerve or all part of the same one?    I even have no skin feeling all the way back into my  scalp on the back of my head!!     My most frustrating problem is that i don't feel where my tongue is , and I've already bitten it badly several times this week just eating.       All my symptoms seem to be getting worse by the day...............

Steve

[JohnnyDiaz]

AN affects people differently. For me I started having a tingly feeling on the top right side of my lip. My eyes twitched and it made it seem like the whole room would jump to the right and then left about 3 or 4 times a minute. I even saw an eye Dr. She could not be sure but attributed these issues to my AN.

After my surgery I have not had any eye twitching symptoms whatsoever. I saw my Dr. last week and told him that the tip of my tongue felt like I had burned it and made everything taste awful. He said that was due to the nerves that were was close to where my tumor was. So I would not be surprised if the AN was causing your issues. I would contact your Dr. and let him know what you are feeling. Knowing this information may help them get an idea of what nerves your tumor is affecting.

[Pooter]

Steve,

Sorry, I've been busy with 2 sick kiddos the last few days so I wasn't able to respond to your post.  I'm glad others jumped in and helped.  On to this one:

[...]My one question this evening is about facial nerves.     I have control over my muscles to smile, etc, but I have no surface feeling on the right side of my face, nor in my mouth or throat.     Is this a seperate nerve from the auditory nerve or all part of the same one?    I even have no skin feeling all the way back into my  scalp on the back of my head!!     My most frustrating problem is that i don't feel where my tongue is , and I've already bitten it badly several times this week just eating.       All my symptoms seem to be getting worse by the day...............
[...]

I believe that your hearing nerve is different than your facial nerve.  My understanding is that where the tumor grows, there are your balance nerve, hearing nerve, and facial nerve all relatively close together.  Hence, this is why so many have varrying degrees and temperment of symptoms.  Like Debbi, I had tinnitus and hearing loss but no other symptoms (and my tumor was 30mm..on the large side).  It's more a product of WHERE it is than how big it is.  It COULD be affecting 2 nerves at one time or all 3.  It all just depends on WHERE it is in relation to those 3 nerves.

The good news, if any can be found in all of this, is that damage to your facial nerve is less likely to be permanent than damage to your hearing nerve.  As Steve pointed out, there are many factors that go into "hearing" than just the nerve and damage there is more often than not permanent because of ancillary damage that damage to the nerve causes. 

Others are exactly right in that it's more important that you select a doctor that's dealt with AN's a LOT (very experienced), research a LOT and select treatment that's best for you, and then accept the fact that whatever is left of symptoms after treatment is something that you can attack after the first goal of removing/killing the tumor is achieved.  If you end up being SSD after treatment, there are options available to you.  If you end up with eye dryness, there are options.  Etc..  The first focus must me on doctor selecting and treatment choice after consulting with various doctors and research about what's available.  It's most important that you select a doctor experienced in dealing with AN's and a treatment choice that's best suited for you and size/location of YOUR tumor.  Everyone is different so this is a personal choice based on several factors.  All we can do is lend our support and explain why WE made OUR choice and what affected OUR choice.  Do what's best for you.

Does that make sense?

Regards,
Brian

[Jim Scott]

Seal:

The short answer to your question is 'yes'.  To the best of my knowledge (I'm not a doctor) the nerve that affects sensation in the face - the 7th nerve - is separate from the 5th nerve that controls the facial muscles that allow us to smile, blink, etc.  I could be mistaken as I haven't studied these things as much as some other, better informed AN patients have but my point, concomitant with Brian's, is that an acoustic neuroma can affect different nerves with no relation to the size of the tumor, based on the location of the tumor.  Hence, the relatively wide variety of pre-diagnosis symptoms often presented and why, if at all possible, an MRI scan is the best way to verify the presence of an acoustic neuroma and get a fairly good idea of it's location. 

If your facial numbness symptoms are increasing in intensity, the the tumor is most likely growing.  That will require that it be addressed, so keep researching and definitely be prepared to make a treatment/doctor/facility decision in the near future.  Procrastination can only invite a longer recovery and possible permanent damage.  I don't want that to happen any more than you do but, without being panicked and hasty, you have to decide how you'll address the AN before it does too much damage.  Maybe you won't have to make that decision today or tomorrow, but soon.  Meanwhile, please take the time necessary to consult with doctors and whatever else is necessary even if it may be inconvenient.  It's worth the time spent.  I wish you success and a good outcome. 

Jim

[Seal]

Thanks Jim & Brian.   I actually will be driving tomorrow afternoon south on Rte. 95 to see Dr. Goodrich in New Haven; this will be the first of several I suspect.     I have also sent a CD copy of my MRI to my cousin, the ENT at Geisinger Institute to get their take on the size, location, and possible best way to go after this tumor.    As I get more names, I will be making more appointments to see different doctors.    I will probably try to narrow down the treatment path soon, and hopefully, I can then focus on choosing the best surgeon for the job.   

I can now snap my fingers next to my right ear and hear nothing.    So I guess that the hearing loss will be a forgone conclusion.    On the bright side, that will probably make me less hesitant to choose more agressive surgery to get this done promptly and to minimize further damage to other nerves as you mention.   

Best regards,
Steve

[Pooter]

Just an aside, send a copy of your MRI CD to House.  They will give you a free phone consultation and recommendation.  If you have no interest in going to LA to have a surgery (some aren't) at least it will give you another professional opinion about treatment choice.

Regards,

Brian

[Seal]

Sorry Brian, but what or who is House?      Right now, I'd be happy to jump on flight to L.A. just to get away from the ice and snow for awhile!