not the 'typical' AN

[nyartist]

My girlfriend was diagnosed with an AN back in January of this year - 1 centimeter, hearing loss, facial weakness on one side, balance problems. The most recent MRI of two weeks ago has shown growth to about 1.2 cm - which is pretty darn fast for a 'typical' neuroma. She is also a breast cancer survivor (18 years ago) and has been told by the best surgeons here in NYC and in the House clinic that the chances for cancer to reappear in the ear canal after 18 years is VERY remote. Still, they are saying that this is not acting the way they would expect a neuroma to act. That brings up other possibilities: viral infection being one of them

She's had  PET scan which was normal and had a spinal tap last week. First results of the tap were also normal but more results are forthcoming. Anyway, because of the growth in the tumor the docs have recommended translab surgery at NYU so she's scheduled there in two weeks. My question is: has anyone else out there ever been told that their mass is not acting like the typical AN?

[leapyrtwins]

From my experience, I'm not sure that any AN is "typical". 

I also had rapid growth - my AN almost doubled from the time of my diagnosis to the time of my surgery, which was only about 6 weeks.  No one really knows why.  I don't have any kind of medical condition that the growth could be attributed to.

IMO the docs suggestion of treating her AN sooner rather than later is a good one.

Jan

[tony]

The jury is still out on this one
- there is a  view that "fast growth" can be linked somehow
to a blood vessel directly into a tumour
Its a bit speculative - the instance is that rare that I am not
sure stats have ever been collated
Best regards
Tony

[Jim Scott]

My question is: has anyone else out there ever been told that their mass is not acting like the typical AN?

Hi:

My answer is: I haven't, although my AN was large when discovered and the doctor speculated that "it could haver been in there for 10 or 15 years" .

Let me add that some acoustic neuromas have to been known to have 'growth spurts'.  I wouldn't be too concerned as long as your girlfriend is having the proper tests (and they're coming back as normal) . 

I pray that her upcoming surgery at NYU will not only be successful but without complications, followed by a rapid recovery. 

Jim

[Mary 117]

As you've noticed, there really isn't a "typical" situation. For me, an MRI showed nothing the first time and then 16 months later is was 2cm. No one knows for sure and we all have different health conditions coming into the "AN" arena. I have Lupus, and lots of people here have other issues as well as the AN. I'm sure health issue raises different problems and it sounds like she has had more then her fair share
Hang in there.
Good Luck,
Mary

[danijake]

I had CT scans done for years-with and without contrast-for severe migraines (every month 2-3...the migraines)and they showed nothing abnormal. Then 3 years later, BAM--a 1.8 cm AN. Very fast growing in 3 years. There is no rhyme or reason why these things grow so rapidly in some and not in others. Also IMO--Jan is right, the sooner the better to get rid of this thing. Best of luck.

Dani

[robynabc]

These tumors can grow fast or slow.  My son is 18 and when they looked at his MRI they speculated that it probably grew pretty fast.  Considering how young Eric is and they saw something on the MRI that made them think that it looked like it had some necrosis in the middle and that made them think it was a fast growing tumor.  According to the ENT faster growing tumors may be easier to remove.  I think this is somewhat speculation though.  I doubt if it is cancerous.  If it is then it is not an AN. But with facial weakness I think that would be very unlikely.  As far as I would know.  Good luck. 

Robyn