Newly diagnosed

[bikermike]

I was recently diagnosed with unilateral Vestibular Schwannoma. 16 x 11.5 mm. Just beginning to get my head around it. . I've had tinnitus in the affected ear for some time and it rages every now and then to the point where it becomes moderately painful. Reading so far, leads me to believe I will put into the "wait and see" category, but I've also read having surgery at this stage also has the best likelihood for retaining hearing.

I am being referred to EVMS, Dr Han who I believe is part of a division specializing in this area led by Dr Strasnick.  I haven't seen either name on this forum related to any experience.

Any and all experience or advice would be welcomed.

[ANSydney]

Welcome to the club that nobody wants to be a member of, but everyone is friendly.

For a 1.6 x 1.15 cm tumor, some will recommend observations. (If you were in Europe, most would recommend observation).

The best way to preserve your hearing for as long as possible is by observation. There are plenty of references in this forum to papers that support that strategy.

I don't think surgery (or any other treatment) improves tinnitus. Take a read of some papers to get a handle on this aspect.

How long have to had tinnitus? (Tumors tend to slow down in growth as the years progress and growth beyond four years is "very rare".)

[bikermike]

Thanks for the welcome. I will definitely be reading as many resources as I can get my hands on.

At this point I can't remember when I did NOT have tinnitus so I would definitely say more that 4 years.  Mostly moderate ringing but will flair up and become almost painfully loud but will subside again after an hour or so.

[gary.s]

Hi Bikermike,

My tumor is almost the identical size to yours at 1.6 cm x 1.2 cm. My first MRI was January, 2017 when I was diagnosed with an acoustic neuroma. Loss of hearing, ringing in the ear, pressure and headaches. I am also in the Watch and Wait group. I took another MRI today in order to see if the thing is growing or stable. My neurosurgeon said that if the tumor is stable and not growing, we will go another 6 months and do another MRI. If not, I will probably go for Gamma Knife radiation due to my age (66) and other medical conditions. Since our tumors are small, we have time to consider all of the options available to us. Most acoustic neuromas grow very slowly, so hopefully we are both in that situation. Best of luck.

Gary

[ANSydney]

Actually, most tumors don't grow at all.

[HolRora]

Welcome to the group! I am very new myself, but I have found the more time you spend on this site learning, the better you are. The information is very comforting. You know what they say, knowledge is power. I hope and pray your AN doesn't grow and that you can stay on W&W for many year, potentially decades. Do keep on top of it per say. Mine was found in January at 1.9cm and in five months has nearly doubled in size. I would put off surgery if I could, but at this point I can not. There are always exceptions to what we know. Best of luck! I'm sorry I have no advice on your doctors. It sounds like high volume is very important.

[KeepSmiling]

You may want to consider Proton Beam radiation, which is what my spouse had in 2013 to treat his vestibular schwanomma (acoustic neuroma) . For us- in 2017 all is well.If you use the advanced search option and look for "Keep Smiling" you may learn details. 

Since 2013 there have been announcements of Pencil Beam Treatment, which may be the very best option, so if you are considering Proton Therapy, it would be prudent to ask many questions and read as much as you can on that subject.

Proton Therapy is not the same as cyber knife (photon therapy) . We studied Cyber knife had a consultation with a doctor but the prospect of getting cyber knife treatment worried us. .

A sibling of my husband is now experiencing "late effects" of photon radiation treatment that was used 20 years ago to treat Hodgkins Disease.  The issues that are at hand ( 2 new tumors) for this sibling are now life threatening.

Watching and waiting is risky, so please be careful! My guy had tinnitus/ partial hearing loss in one ear in 2009 and then suddenly went completely deaf in that one ear in 2013. The doc who diagnosed the partial hearing loss in one ear did not order an MRI of the brain ( An MRI should be ordered:with and without contrast) -so we do not know what the size of the tumor was in 2009. If you decide to watch and wait, please keep watching it very closely, with regularly scheduled MRI's of the brain.

Each situation is unique. Keep digging for answers. Be determined to find what is best for you. We are here for you.

[bikermike]

Thanks to all for the information and guidance. First meeting with Neurotology on Monday. Let the journey begin.