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golfguy49:
Hello everyone,

I am a new guy here.  I was told 10 days ago that my MRI showed AN, so I had another MRI focused on the ears and there it was, a 1cm left-side AN that is a bit elongated like a kidney bean.  I have so far consulted with Dr. Fishman at Northwestern Medicine in Chicago.  I have had constant tinnitus since August 2017 and my balance is little off.  He said at some point in my life this will need to come out.  Middle fossa is likely the best option, as I still have about 80-90% hearing in that left ear, and I am 46.  Has anyone been treated by Dr. Fishman and his team?  While I don't need to make an immediate decision,  taking it out at this size seems to be the safest choice before it gets bigger because recovery only gets more difficult and risks go up.  Gamma Knife doesn't sound like a great option for someone my age.  Clearly, the facial nerve is most concerning and it seems I would have a 90%+ chance of preserving that if we do this soon.

I look forward to any thoughts out there.  Thanks.

KeepSmiling:
Welcome to the discussions about this unfortunate affliction. Having a Vestibular Schwannoma (VS), which is also called an Acoustic Neuroma (AN), is not an easy situation and we feel for you.  After you read about this, you may realize there is a lack of consensus about optimum treatment. It also appears that there is often a lack of truly informed consent. Doctors often inform the Acoustic Neuroma (AN) patients of only that which is their own specialty in medicine -and it seems that perhaps the risks are often underplayed.  The end result is that true informed consent isn't alway available to the patient, unless the patient researches this independently.

MySuggestions:

Definitely get more opinions. Send your MRI of the Brain to specialty doctors and respectfully request their review.

Maybe you could watch and wait, while staying hyper-vigilant- by scheduling frequent MRI's of the brain?   One incentive to watch and wait is that  new developments could be underway. For example: https://stankovic.hms.harvard.edu/files/konstantina-stankovic-md-phd/files/ren2017.pdf

 A reason to take action now and not to watch and wait is that the Acoustic Neuroma doesn't always have slow growth. (Do a search about "rapid growth" at any relevant discussion forums you find)

Rarely is Proton Therapy ever mentioned as an option by mostly all doctors who see patients about Acoustic Neuromas. Suggestion: Research about Proton PENCIL BEAM Radiation. It is the newest innovation with Proton Therapy.  Here is one of the best videos I've seen on the basics of proton beam therapy; prepared by a medical physicist:  https://www.youtube.com/watch?v=DFKAFXDguFo. Please watch it until the end. It gets detailed but it is worthwhile. (By the way, my husband had a very good outcome with Proton Beam Radiation in 2013, which is not the same as the newest Pencil Beam Radiation. We were very impressed with Massachusetts General Hospital Francis H. Burr Proton Therapy Center http://www.massgeneral.org/radiationoncology/Proton_FAQs.aspx. Do a search under my alias "Keep Smiling" or look at the profile description, to understand my husband's good outcome.  )

Good luck-Sending you best wishes!

ANSydney:
Why not do a repeat MRI 6 months after the diagnostic MRI to see it is still growing? Mine has been a stable size since it was diagnosed in August 2016. I've had four MRIs so far spaced 6 months apart and will keep having them every 6 months for the foresable future. The neurosurgeon that I consulted with said that if it doesn't grow, there is no need to do anything.

You can see my story at https://www.anausa.org/smf/index.php?topic=23197.msg979772502#msg979772502

golfguy49:
Thanks for the replies.  I guess there are 2 main reasons I am considering surgery soon:  (1) with a middle fossa procedure it seems I have a chance of retaining some hearing in the left ear, so I don't know that I want to wait until the hearing is one day all of a sudden gone, and (2)  I have some mild balance issues that seem to really sap me of energy.  It seems my eyes work extra hard to navigate the world around me and keep me upright (no falls yet), and I thus get tired very easily and quality of life has declined in the last 4-6 months.  It is also nearly impossible to work out without quickly finding the room spinning a bit, so concerns for my overall health in other ways creeps in - I don't want to be a couch potato for the next XX years because I am so wiped all the time.

I realize recovery could be just as difficult, if not more difficult, than what I am experiencing now, but I am hoping that if I did this at 1cm the recovery might be more manageable with less risk to the facial nerve.  If I wait until the tumor is 2cm, the facial nerve risk goes up by 20-30%.  With 15-18 years of career work left in me, that's not something I want to really risk.  I'm not an actor or anything, but symmetry matters in many types of careers, I am very honest about that.

So I am considering being proactive.  If I was 60, I would absolute wait, but being 46 leaves me a lot of time to deal with issues such as tumor growth, my career (sole family breadwinner), private health insurance issues, etc.  I also understand that new treatments could save the day for us all in 5 or 10 years, so that carries a heavy weight in the decision as well.  I am going to consult with at least one other Dr. (sent MRI disc today) and listen to what they have to say as well, but I appreciate the thoughts of everyone on the forum as well.

rupert:
In looking at your user name I take it that you might golf a bit.  Having a brain tumor is a great excuse to your buddy's after a somewhat off round. ;D   I like the way you're thinking about this. I consider the watch and wait group very courageous but,  I myself cannot understand why you would want to wait until it grows and possibly  cause more damage before getting it treated. Other than the proton treatment KeepSmilling mentioned I haven't seen evidence of any new or remarkable treatment advances in the last ten years but yeah, who knows what the future holds. Keep doing your research, get some other opinions and go with your gut feeling.  What ever treatment you decide, the outcomes are usually excellent.  Good luck to you.

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