First post ~ advice/calming needed

[Tumbleweed]

Dr 1 said radiation is not an option because it is difficult to operate on a radiated tumor.

The most experienced neurosurgeons by and large will tell you that this is not a problem for a very skilled surgeon. If your doctor only performs a dozen AN resections each year, then sure, it could be more difficult for them to operate on an irradiated tumor. But the best doctors -- those who do one or two AN surgeries per week -- will likely tell you this is not a significant factor.

Btw, I think your W&W strategy (unless and until growth is noted in a followup MRI) makes good sense. It's what I would probably personally choose in your situation, with one caveat: If your symptoms worsen, consider getting treatment (even if there is no further growth). An AN needn't grow bigger to damage the balance nerve further. That said, your AN is relatively small and W&W is a totally reasonable strategy.

Best wishes,
TW

[Aprilcl]

Thanks! with your support I will W&W&W&W (watch and wait and wink and wobble) until my mri!

[chloes mema]

An AN needn't grow bigger to damage the balance nerve further.

How is that so?  I assumed if it didn't grow nothing further would develop symptom wise.  Just curious.

Karen

[mindyandy]

April
Sounds like you having some "tumor tantrums". Thats no fun...I know this. I'm not sure who your doctor is but my opinion is to send out your scans to various Dr's. Such as House Dr. Friedmand or Dr. Gantz or another great surgeon that is mentioned here. Just to get opinions. Surgery does not mean facial paralasis(sp?). House leaves a scrap on there so it does not damage the nerve. So I heard.
I had CK done 4 years ago and had recently started having issues again etc etc.
As my friend here on this forum StephSF said "time to move forward" 

Take Care April Let us know your decision
Mindy

[Tumbleweed]

An AN needn't grow bigger to damage the balance nerve further.

How is that so?  I assumed if it didn't grow nothing further would develop symptom wise.  Just curious.

Karen

The prolonged pressure of an AN on a cranial nerve -- especially inside tight spaces like the bony internal auditory canal -- can reduce blood flow to that nerve. Without good blood flow, the nerve's function could degrade over time.

To understand this, imagine a blood-pressure cuff on your arm. If it's only tightened a little bit, you might have some tingling sensation but your arm might function properly. Leave the cuff on for a year or two, however, and the reduced blood flow to your arm would likely result in tissue death. Same thing with an AN crowding a cranial nerve. The AN might not grow over the course of a year, but the pressure on the nerve still remains.

Some cranial nerves -- those that control muscles, for example -- are more robust and can better withstand a tumor growing on them. The sensory nerves such as those for hearing and balance, however, are more sensitive.

Best wishes,
TW

[lrobie]

Tumbleweed,

I like your explanation.  It makes sense to me.

Lisa

[chloes mema]

TW - thanks for the explanation, no one ever brought that up that I can remember & it's certainly a need to know piece of information.  Now that's more to ponder.

Karen

[Aprilcl]

Tumbleweed - is that true with the facial nerve too?  My face (tumor side) contorts regularly (mouth turns up, eye closes) and stays that way for a few minutes.  The Dr said it was just the tumor touching the facial nerve, irritating it and not to worry.  Could it be damaging it? 

[Tumbleweed]

April:

Your doctor would know far better than I what the risk is to your facial nerve; he has seen your MRIs and is the expert.

That said, the good news is that the facial nerve is a motor nerve and thus more resilient than the hearing and balance (i.e., sensory) nerves.

Sorry I can't be more helpful.

Best wishes,
TW

[KBL]

Hi, I had a shot to kill off my balance nerve.    The Doctor said that would help with my recovery in giving me me less vertigo after surgery.   They knew the nerve would not survive surgery.  This way I had a chance to adjust to the nerve being gone before surgery since, for me it was it huge tumor and a long surgery, and I would have enough to deal with the way it was.  His explanation made sense to me.  Karen

[stephSF]

Hi, I would get more opinions which, in my personal experience, should include dr. Friedman from HEI Los Angeles!   I am 2 weeks post op today and have no regrets with my surgery and I am doing pretty great.  Go with experts that have done hundreds and hundreds of the type of procedure you are leaning towards!!
Stephanie

[Ellen K]

Hi Chris,
Welcome to the W&W crew - you've heard from some of the venerable "elders" in our community who provide wonderful advice.  I'm still something of a newbie (see my tag), and like you I have a small tumor.   I did want to put in a plug for physical therapy for balance issues.  Just a few sessions helped me with fairly debilitating dizziness.  It's not that it's gone away, but I'm much better able to cope and my symptoms have diminished in severity.  It can't hurt, and insurance often covers at least a portion of it.

Given how small my tumor is, I do have weird facial symptoms (it feels like my chin is folding up, if that makes sense) and occasional tingling/numbness.  My first reaction to all of this (everything, not just facial symptoms) was outrage.  I mean, come on, I'm not even 50 and I'm falling apart?  After taking such good care of myself?  I got a second diagnosis at the same time as the AN of a hereditary tremor, so my hands and occasionally my legs and voice now shake.  It seemed just so crazy.  But I've come to a new place of realizing that there is no "fair" with health.  You just make the best of it and get to a place of gratitude that it's not something far worse.  It just takes a while to get there and on "tumor tantrum" days (I like that expression!) it's harder to remember.

I'm so glad you are getting second opinions.  All the best to you.  I hope you can take your time.
Ellen