Author Topic: 'Watch and wait' has turned to surgery. So many questions  (Read 1762 times)


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'Watch and wait' has turned to surgery. So many questions
« on: November 23, 2019, 11:19:24 pm »
Hello out there,

I've never posted on one of these sites before and don't really know what to say. I have a head swirling with questions and fears and need to get them out there. Hopefully, someone will relate but if not, maybe the experience will be cathartic.

I was diagnosed with NF2 four years ago, on my 29th birthday. I have had about 5 MRIs each year and 2 courses of Avastin - once in 2016, the other in 2018.

It's now come to the point where they want to get in there and take the right AN out as it's pressing into the brainstem quite significantly. I've got mixed feelings. Part of me is terrified that I'm going to have a stroke and die or be left with a paralyzed face - doomed to spend my life in hiding. The other part is relieved at getting the monkey off my back and having surgery at a young age.

I live in Western Australia and am meeting my neurosurgeon tomorrow to discuss the plan. I know Johns Hopkins is meant to be incredible but that is out of reach for me. I have wondered about Sydney or Melbourne as they have bigger populations and so, more experienced surgeons. I saw Andrew Kaye in 2017 however he has since retired (not surprisingly - he seemed a little elderly and Gollum-like) and I am unsure of his replacement.

Does anyone have any recommendations? Either for surgeons or just for how to approach this next step? I'd appreciate any ideas for questions to ask prospective surgeons.

Thanks for taking the time to read my message.

Jill Marie

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Re: 'Watch and wait' has turned to surgery. So many questions
« Reply #1 on: November 25, 2019, 06:30:57 pm »
Hi Hannah,  I suggest you send a private message to Chambo, he had translab surgery in Melbourne in 2006.  I don't know how often he checks on the board so a private message might be best.  I was messaging him a few months ago.  I know there are others from Australia on the board as well. 

As for me, I had translab surgery in 1992 at the age of 36.  My left side is paralyzed but looks normal at rest, can't smile but I can grin.  I just retired after working in an office and dealt with customers all day, worked there for 24 years.  Hopefully all goes well with your surgery but if there is some paralysis you won't have to go into hiding.  The chances of you having a stroke or dieing isn't worth worrying about, it rarely, rarely happens.  Instead you can focus on what to do to help you have the best outcome you can. 

I'm sure others will chime in soon to help ease your fears.  Jill Marie
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.


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Re: 'Watch and wait' has turned to surgery. So many questions
« Reply #2 on: December 01, 2019, 09:34:38 am »
Hi Hannah,

Chiming in on the treatment -- echoing Jill Marie's comments. I had retrosigmoid surgery 8/18 and came out really well. I have NO regrets. Its easy to say, as I did not have any facial paralysis, but i am still learning every day on living with single sided hearing and it has been a new normal.

All I read indicated this is a pretty common surgery (which is amazing in and of itself...).

There are some great papers / seminars on the ANA website that explain options and risks, and i strongly recommend spending some time reviewing them. They helped me make the right decisions in treatment.

5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm