Quick question about radiation after surgery

[Jeepers]

Hah! I should know there's no such thing as a "quick" question when it comes to ANs, but when I met with the neurosurg counterpart of the surgical team, it was agreed that until they get in there, they don't know whether the tumor is free and clear or mucked up and between the nerves. He agreed that sometimes it happens that they might leave a bit of tumor to save, for instance, the facial nerve. If I heard correctly, he said they would then do radiation.  Did I hear correctly?

In my case, I know I will lose my hearing - and that's fine - it's already very minimal. I am concerned about rehabbing my balance however (which is out of whack), and it's agreed that cutting the balance nerve is the best way to accomplish this by letting your brain adjust without the misfires that would continue to occur if radiation was used.

So. They go in, cut the hearing nerve and cut the balance nerve. Maybe they notice the tumor is wrapped around the facial which further surgical intervention might screw up. So they tenderly remove what they can and leave some of the tumor stuck to the facial nerve so no damage takes place.

They then recommend radiation, specifically for the facial nerve/tumor ... since the other two nerves are already a done deal, radiation can do no further damage, and the final hope would be for radiation to do what surgery couldn't ... get rid of (kill) the tumor on the facial nerve without damaging the facial nerve.

Have I got my stories straight??

Ok - one more quick question ...

How does radiation avoid killing the facial nerve if the tumor is tangled up in it? I know it's precise placement, but do they only need to zap a portion of the tumor to get it to die?

[ppearl214]

my answer... Jim Scott 

They surgically debulked his AN, then radiated.  he's noted it many times around here... maybe he'll log on soon.

Phyl

[leapyrtwins]

You do have your stories straight - and I second Phyl's response.

Jim had his AN debulked and then radiated and his is a great success story 

Also, just to note, it's good to be aware that debulking and radiation are a possiblity, but don't convince yourself that surgery alone won't work just fine.

As the neurosurgeon said, you never know what you're dealing with until you get inside and see it. 

Part of my plan in choosing retrosigmoid over translab was the hope that my docs could save my hearing - diminished as it was.  But once "inside" they discovered that my AN was wrapped around my hearing nerve, so the hearing nerve was "sacrificed" and I ended up SSD.

So, all I can say is - the best laid plans . . . 

Jan   

[Jim Scott]

Hi, Jeepers:

Jim Scott here. 

Yes, my neurosurgeon heeded my concerns about facial paralysis and, based on his own prior success with a 2-stage treatment, advised me to allow him to partially resection the 4.5 cm AN, then after a 90-day 'healing period', use FSR to destroy the remaining tumor's DNA -  and 'finish it off'.  He did a splendid job and I came out of the surgery (retrosigmoid approach was used) with no faciial deficits - and all my symptoms were gone.  My hearing had long since disappeared so that wasn't a big issue.  I had some slight imbalance issues, post-op, but they resolved in a few months.

The later radiation 'treatments' were very precisely 'mapped' by my neurosurgeon and a highly talented radiation oncologist he worked with using 'fresh' CT and  MRI scans.  They manged to hit the remaining AN and avoid the facial nerves.  That's why they get the big bucks, I guess. 

I had almost no deficits immediately post-op and was driving within two weeks of my surgery.  The FSR treatments were uneventful.  3 years out, I'm fine and consider myself blessed.

So, as far as I know, you have the surgery/radiation scenario correct, although I can't speak to the case of an AN 'tangled up' with the facial nerve.  That's a good question for a doctor to answer - because I can't.  I suspect they only 'zap' a portion of the remaining tumor but I cannot verify this - and I'm not a doctor.

I hope some of this is useful for you. 

Jim

[Jeepers]

EXcellent, Jim!!!

Thank you so much for telling your story.

I've been favoring surgery all along, so right now only the final fear of making the phone call remains. For insurance and work reasons, I need to make my move relatively soon, which is probably for the best, as I don't know how I could stand to ponder this month after month. So I will try to relax this weekend, see if any other major concerns pop into my head, and maybe make that call next week.

Many thanks, my friend! 

[Jeepers]

Also, just to note, it's good to be aware that debulking and radiation are a possiblity, but don't convince yourself that surgery alone won't work just fine.

Jan   

Hey, Jan ... I know just what you're saying. Just trying to cover as many scenarios as possible. I think that's about all we can do when the choices are so difficult.

I will agree with you about Dr. Battista. I appreciate not only his patience and thoroughness, but his objective reporting of both options. I feel I will be in great hands.   

[leapyrtwins]

So, you decided on Dr. Battista? 

I'm obviously very biased, but let me just say GREAT choice    He is very patient and thorough.  Initially I found him a little too serious for me, but once he figured out that humor helped me deal with lots of tough stuff and helped me ignore my nervousness and fear, he soon adjusted his style to adapt to my needs.  I find him to be a very caring man.

And I'm all for covering your bases - just wanted to point out that although it's good to be aware of "situations" don't get too worried about them.  The best way to deal with AN surgery is to just take things as they come.  Be knowledge about what may happen, but try not to stress about things that may never occur.

You will be in great hands,

Jan