Likelihood of re-growth post AN surgery - data?

[MarkS]

Hi all,
Quick question for y'all. (ok ... a few questions ).  I had AN surgery about 7 weeks ago (retro approach), and things are going reasonably well and I'm back at work.  However the doc couldn't quite remove the whole thing, due to it sticking to the facial nerve.  He said he got "98%" of it, and I'll be getting follow-up MRIs to check for regrowth.  He also said regrowth was highly unlikely, but he didn't put a number on it.  I'm aware that docs want you not to worry, but I'm a "numbers" kind of guy, and that kind of info would ease my mind a whole lot more than their vague assurances.

So ... first, does anyone have solid info about the historical odds of regrowth?  Is it dependent on the amount of tumor that was left behind?
Second: If I DO have regrowth later, then they say radiation is the way to go.  If that happens, they assure me that radiation will knock it out, with no side effects ... but again I am a little skeptical about their assurances.  Does anyone have hard info there, about odds of success?
Thanks in advance,
Mark

[JLR]

Hello I am 6 months post op also retro approach.  My 3 month MRI showed slight regrowth said it just might be post operative changes and have another MRI in 3 months. I had the MRI yesterday. Have dr appt next week.  The doc did tell me if there is regrowth I would need radiation. My biggest fear is the residual tumor is stuck on the facial nerve. I already have recovering facial paralysis and don't want to start all over again. So yes regrowth is a definite possibility. Surgeon removed 95% of tumor. 5% was left on facial nerve. The MRI will be very telling. I have no other info as I don't believe there's a tremendous group on this forum that has had regrowth with a radiation follow up with 5-10 years of data on side effects.

[Tod]

There are some studies available. I don't have them at hand because I've quit worrying about it. PaulW or someone else may have them handy. I think though that part of the calculus to consider is whether or not the tumor has a good supply. Mine is on an artery, so 18 months after removing 90-95% it was clearly growing again. We did 28 sessions of FSR in in Feb 2012 and last year's MRI was great, and the next is scheduled a year from now.

-Tod

[riabovamd]

2 factors predict  regrowth : 1. Completeness of original surgery - was it total, near total (less than 5 mm sliver left) or subtotal (more than 5 mm sliver left).  Huge difference with subtotal resulting in almost 50% recurrence.  2.  Enhancement on the first post op MRI: if it  is nodular- regrowth  is more likely  than in linear one. Age, tumor histology, size of original tumor are NOT associated with recurrence...

[JLR]

The results of the MRI follow up of regrowth is that it is stable. No additional growth. In fact the regrowth that was seen last time was post operative changes and should settle down shortly. I'm still recovering. But, here's a few questions re nerve regeneration. On my chin I now have a dent or dimple that comes and goes....is this the nerve mending ? My right nostril has a very very annoying tickle that also comes and goes...is this nerve mending too? And I noticed today that my smile which had totally straightened out is now slightly curving to the right.  Just a quick history. I'm 6 months post retrosig at NYP Weill Cornell. 95 % removal. 5% left on sticky facial nerve. Drs did not touch that nerve but it did become damaged during surgery. Did not have facial paralysis until several days after surgery. Zero balance, zero walking.  Had several months of physical therapy and happy to report balance and walking is now 100%. Still have paralysis on right side face but it's getting better I hope. My eye is improving but I goop it every 2 hours and at bedtime I tape. This is no picnic. Probably the hardest thing we have all gone thru.  Oh and my tumor was a radiated one. Had Cyber Knife in 2010.It never became necrotic. It was stable and shrunk some then began to grow. Surgery November 2016.  Have a fun Memorial Day weekend. 

[lifeisgoodnow]

I definitely recommend Jackie Diels who is a facial retrainer out of Wisconsin for anyone with face issues. I was told to do exercises right away from my surgeon and then was told to wait at least 6 months by someone else. Regardless, synkinesis set in on my face about 8 mo post surgery. I had the dimple and still have it. Jackie explained that my muscles on the affected side were actually over active vs underactive. It made sense after I saw her.
I had botox a few times. Stopped that nonsense though since I don't like what is injected into my body.  You can do some exercises like massage on the face and pushing down on the dimple to relieve that trigger point.
I am 14 years post surgery and still have issues with my face particularly in pictures. If I think too much about it, my eye starts to close when I smile. I usually try to relax as much as possible.
Does anyone know how I can insert pictures on this site?
Best to you!
Mary

[JLR]

Hi Mary thanks for the info. How long did the synkinesis last. Re a facial therapist. Wisconsin way to far. I'm in NY. anyone have info. Thanks, Joan