Facial Nerve tumor growth

[MikeW]

My husbands tumor seems to be growing quickly.  He has had 2 surgeries, the second removed most of the tumor.  The tumor appears to be thriving so the doctors assume it is because it is growing out of the facial nerve.  In this case, some doctors feel the only way to get rid of the tumor is to cut the facial nerve.  If a tumor is growing out of the balance or acoustic nerve, then surgery or radiation can take care of it, but if it is growing out of the facial nerve, then the facial nerve will have to be cut.  Has anyone heard of a tumor that won't stop growing?

[CHD63]

Hi Marilyn .....

I took time to go back a re-read your previous posts on Mike's long AN journey.

You do not say if you have been consulting with Drs. Slattery/Schwartz during the discovery of the latest regrowth, but I certainly hope so.

I know you consulted with Dr. Friedman in the past.  If you have not already contacted him, I would for another opinion, because USC has a very multi-faceted approach to AN treatment, including dealing with regrowth using radiation, as well as surgery.

Drs. Friedman/Schwartz did my translab surgery for regrowth three years ago and I still send all of my post-op MRIs to Dr. Friedman ..... in fact, he sends the order for them to the imaging facility.  I also make a 3-hr drive each time to a university medical center that has the largest Tesla MRI machine to be able to do finer cuts on the scan to see growth more quickly.

Dr. Fred Barker, from Massachusetts General, gave a talk at the ANA Symposium in LA a year ago on regrowth.  Among many other things, he said that if the original tumor was a rapidly growing one (unusual for ANs), any regrowth is likely to be rapid.  This seems to be Mike's case.

Regrowth is still considered extremely rare because usually any remaining tumor will die when the blood supply is cut.  However, if even one cell is left from a highly active tumor, the potential for regrowth is there.

So many thoughts and prayers for both Mike and you.  PM me if you would like to talk.

Clarice

[Cheryl R]

I can't talk about regrowth but can about a facial neuroma as had one as one of my having had 3 different tumors due to NF2.      I go to Univ of Iowa and Dr Bruce Gantz.        My facial nerve was severed and had been told pre op that if it was then he would immed take a nerve from by the ear and graft in.   This was done and took time but the face did improve to where it is not perfect but I look ok at rest.     Little movement around the eye but it closes pretty well.             I would make sure you have talked to Dr Slattery.       I have met him at the AN symposiums as he talks about NF2 there.          I would do treatment sooner than later if need be.               My facial neuroma was not seen on a MRI one year and there  around 2 cm the next so mine did grow fast.
                      Keep us posted on how it goes.                      Cheryl R