I'm new, I'm scared, but I'm here

[MAlegant]

Hi all,
I have been recently diagnosed with a 3cm AN on the cerebellum pontine angle.  Have had intermittent facial pain/numbness for quite some time but had really ignored it.  I've had no discernible hearing loss.  I am 48, in good health, a runner and a wife and mom.  I am also a musician (a singer) and work as an academic dean at a conservatory.  This would have continued to be undiagnosed if not for my excellent primary care physician who suggested an MRI after I explained my symptoms.  Right now we are seeking the right surgeon, one who will try mightily to spare my facial nerve and my hearing, though I know there are no guarantees.  I live near Cleveland, so the Cleveland Clinic is my best bet and that is where I assume I'll have my surgery.  In the end, coming through this in almost any condition is better than the alternative but I fear my life is about to change in a dramatic way.  It's amazing how close we all are to the edge, we just don't know it until something like this happens to us or to a loved one.  I appreciate being able to post on this forum and reading the posts has alternately terrified and emboldened me.  I'll keep you all posted. 
Marci

[sgerrard]

Hi Marci,

Glad you figured out how to start your own thread. Forum navigation is an important skill.

As others will tell you, taking a little time to find the right surgeon is well worth the effort. You may lose the hearing on the AN side, which is always harder for the musically inclined, but not an insurmountable problem. There is a good chance that will be the only significant issue. In some cases, an effort to spare the facial nerve means leaving a little bit behind, and treating it later with radiation if needed. That has worked out well for several people on this forum.

I think you are right, your life is about to change in a significant way. Most of the time, the "new normal" turns out to be quite workable and acceptable, so there is every reason to be optimistic instead of terrified. You can't really determine the outcome beforehand; you just have to go through all the steps, and see where you end up afterwards.

Best wishes,

Steve

[Debbi]

Hi Marci-

Welcome to our little family - the one that no one really wants to have been a part of...  You are, however, in great company here - we have all gone through or are going through this same process. 

I've seen lots of great things about the Cleveland Clinic, so it seems that you are going to be in good hands.  You may also want to send your MRI CD (copy) to House Ear Clinic in LA, as they will do a free telephone consult for you.  That was the first opinion I got, and although I chose to have surgery close to home in NYC, I would have been in equally excellent hands at HEI.  Interestingly, they were the first of three surgical teams to suggest that translab was really the best approach for me given size/location of the tumor.  Along with that approach, of course, comes SSD which scared the pants off me.  However, I will say that SSD is not as bad as I feared, at least not so far.  I hear everything extremely well through my left ear, and that includes music.  My husband would tell you that I actually hear more things now than I did pre-surgery (even though my AN side hearing was not that bad).  I believe my non-AN ear is working more effeciiently now and hearing more tones and sounds.  Of course, I may be completely nuts on this - but that's what I believe!   

Post any questions, fears, concerns you have here - you'll always get lots of great response.  I can honestly say that I would not have gotten through this nearly as well without all the caring, knowledgable and supportive people on this form!

Wishing you some calm moments,

Debbi

[cmp]

Marci--

Glad you started your own thread!

In response to your question on the other one: I'm doing quite well. My recent surgery was for a smaller regrowth of a much larger AN removed 20 years ago, and that first surgery was much tougher to bounce back from for a number of reasons, one of which I'm convinced is how utterly unprepared I was for what was coming! You are very wise to be gathering info here as you research your options out there...

I think the fact that you are a runner will stand you in good stead (stamina and a well-exercised vestibular system should come in very handy post-surgery...).

Like you, my AN was found (in '89) by my family doctor. We were living in Podunk, NM; ANs were pretty much off the medical radar at the time; and yet I lucked out and checked out my weird but not terribly bothersome symptoms with the one doctor in probably a 3 state radius who came up with the correct diagnosis on his first try!

About how reading posts here can frighten as well as reassure: I absolutely identify with that. Sometimes, in the weeks after my (re)diagnosis this February, I found myself latching onto threads posted by folks who had had problematic outcomes, and had to remind myself (as is so frequently pointed out by wiser, calmer heads here) that ANs are slow growing, benign, and if you get yourself a surgeon with lots of AN experience, the chances of your coming through treatment for one just fine is excellent!

Carrie

[Pembo]

I had my surgery at University Hospitals Cleveland with Dr Megerina. I highly recommend him, at the very least for a consult. Sent you a private message........

[Jim Scott]

Hi, Marcie:

Let me extend yet another welcome to our site and forums. 

My take on your AN situation is that your fears are completely natural.  It would be condescending to assure you that you have nothing to be concerned about and that your fears are groundless.  They aren't.  As you have observed and others agree (as do I), your life will change somewhat in the months ahead.  No one likes that kind of involuntary change, but we are surprisingly adaptable creatures and, although no one can predict the future, I'm confident that you'll do just fine.  You're relatively young, admittedly in good health and active as well as putting yourself in good hands with the Cleveland Clinic. 

The good news is that an Acoustic Neuroma is almost never malignant and can be effectively treated with surgery, radiation or sometimes, both, as mine was.  I'm much older than you, probably not as vigorous and I underwent surgery + radiation and came through very well.  I was able to regain normalcy in a fairly short period of time.  That says nothing about what you'll experience, of course, as every case/patient is unique and yes, some AN patients do have complications and problems following surgery/treatment but many do not or else they experience transitory problems that are resolved within weeks to a few months. 

I like to use the metaphor that having an Acoustic Neuroma is a 'minefield' because I see it as analogous.  Unfortunately, the AN diagnosis is not optional and we all have to deal with it, physically and emotionally. From the realistic character of your post and the optimistic attitude I perceived trying to surface within it, I think you'll navigate this situation quite well, Marci.  We're here to help you do that.  Just ask. 

I wish you all the best as you begin this journey and I'll look forward to seeing more posts from you, soon. 

Jim

[MAlegant]

Hi all,
So here's a question for you: what is the best way to deal with spouse's/partners who are having a really hard time with this?  My poor husband is a wreck and though I'm trying to "pick him up", it's not working.  He's depressed and anxious and though I know he'll be a rock when he needs to, right now he's in bad shape.  Any advice?
Marci

[Debbi]

Hi Marci-

Would it help him to read some of the threads on this forum?  Or, to read other information about Acoustic Neuromas?  My husband read everything he could get his hands on the first few weeks.  He also went to all my doctor's appointments, and talked to some of the WTT folks when I had calls scheduled. 

I personally think that it is almost easier to have the AN than to be the person who loves the ANer.  Your husband probably feels completely helpless, and that's just not easy for anyone.

Be patient with each other - it's a hard time for both of you.

Debbi

[MAlegant]

Hi all,
We met with Dr. Barnett at the Cleveland Clinic today and had to rule out GK because of the type of tumor I have.  We will meet with Dr. Selman at UH shortly and it will be a difficult decision,  Barnett is a top surgeon, so is Selman, how does one make such a life altering decision? Help....
Marci

[cmp]

Hi Marci,

As an ANer whose spouse has been certifiable the past couple of weeks (he was pretty solid leading up to and for the first 2 weeks after surgery, but as soon as it became clear I was recovering OK, he kind of came apart at the seams-- from pent-up stress, I guess...), and who literally bounced off walls 20 years ago, I fully empathize with your concern. I agree with Debbi that he may calm down if he's a little more informed; both an overview of AN as well as getting to know some individual stories (which you can pick and choose for best effect!) may help tremendously.

I was pretty much in the dark myself the first time around, but even so I knew that what was most at risk, for me, was my facial function (due to the size of the tumor). But DH remained convinced (up to late March of this year, when, heaving a huge sigh, I FORCED him to sit down with the statistics) that I had had a 50/50 chance of dying during surgery! I never realized that's what he was so terrified of--it certainly explained a lot... 

Re the neurosurgeon doctor search: I got my recommendation from my original surgeon, then confirmed it by researching the doc's background (he had a website online with his full vitae and publications) as well as seeing what folks on this forum had to say about him.

I don't find anything about dr Barnett in past threads, but doing a search for Dr Selman turned up several threads you may want to check out. Here's the link:

http://anausa.org/forum/index.php?action=search2

Carrie

[MAlegant]

Hi Carrie,
Thanks for yours.  I tried the thread but it didn't lead anywhere. Once more?  And I can't say enough about how much I appreciate everyone here.
Marci

[cmp]

Hmm... Sorry about that--I thought I could link to the search for you, but apparently not.

Just enter "Dr Selman" in the "Search" box above, and you'll get the same results I did.

Carrie

[claire1]

Hi Marci

Welcome to our special family,not only, because we all have acoustic neuromas but because there are so many special people here to help walk you through and support you through this whole ordeal.  Your husband is also part of our family so we would also like to help him as well with whatever questions he may have. We can give our thoughts as patients but leave the technical questions to the dr's. What we can't answer the "Cyberknife patient support group.org"  link has the best of the best Dr.'s that volunteer their time,energy,and expertice to help answer questions that are concerns to us.  Please log on to ease your minds with answeres so you can move confidently through the AN journey with your next questions. You'll be surprised how many others have the same questions. You are not alone.

Best wishes and congrads for finding this site.
Claire

[leapyrtwins]

Hi, Marci and welcome.  Sorry you have to be here, but there are worse places and you'll find the members of this forum very helpful and very supportive.

I see you have a 3 cm acoustic neuroma which is at the upper limits of radiation, so I assume you are currently researching surgery.

I had surgery a year ago and I had a great outcome - my only lasting issue is SSD (single-sided deafness).   I had a BAHA implant about 4 months ago and it's really helped with my SSD.

I encourage you to contact the ANA and request their literature on ANs - it's very helpful.

Jan

[wendysig]

Hi Marci -
Welcome to this forum.  I think you will find this forum to be a fountain of information, compassion and understanding.  Feel free to post any questions, fears or just vent when you need to.  We are all here to help and support one another.  I have to agree with Jan about BAHA or Transear, expecially since you are musically inclined.  From what I understand (I'm having surrgery next Friday and plan to have the surgery and get the  BAHA processor as soon as possible) it's not quite the same as natural hearing but helps a lot.  I wish you the best of luck and hope your husband will soon get a handle on things.  I know this is a scary experience for him as well as you.

Best wishes,
Wendy