Author Topic: Old lurker, new commentor 3yrs in W&W  (Read 1266 times)

EricC

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Old lurker, new commentor 3yrs in W&W
« on: May 19, 2017, 01:58:20 pm »
Hello,

I lost my hearing suddenly about 3 years ago and they found a very small Schwannoma on my right side (3.9mmx2.1mmx2.5mm).  It might be small but its wrapped up around the acoustic nerve and into the cochlea itself.  In the three years its tripled in size but still small (4.6x3.4x2.9).   With just 10% hearing left I went ahead and got a Ponto abundment installed 18 days ago.  Now I wait until "snap day" (Aug 4th).

I also have generalized anxiety so I'm sitting and waiting for my ponto and my surgery.  I obsessively check my balance and look at MRI scans.  I'm not sure I have a question....just anxiously waiting and wanted to say hi.  35 years old with 2 kids....so much fun ( I work in a university and tell the undergrads not to turn 30...its all down hill:)

My hearing is not salvagable since its on the cochlea.  Thoughts on surgery types and radiation?  I'm hesitant on gamma knife since I don't see much literature about radiation long term (again...I'm 35, don't want a brain tumor at 65).  Plus if after 30 years it starts growing again, then they might have to cut it out and I get the surgery anyway except I'm much older and less fit. 

Thanks for reading my rambling!

-Eric
4.6 x 3.4 x 2.9 mm (2017)
4.3 x 2.4x 2.5 mm (2016)
3.9 x 2.1 x 2.5 mm (2015)

ANSydney

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Re: Old lurker, new commentor 3yrs in W&W
« Reply #1 on: May 19, 2017, 04:48:36 pm »
Welcome to the forum Eric.

It's great to see that your tumor dimensions are provide with a resolution of 0.1 mm.

Sad to hear than your hearing has deteriorated. It looks like hearing and acoustic neuromas are not compatible. (I don't think people appreciate the benefits of binaural hearing until its (suddenly) lost.)

On a volume basis, your tumor has grown closer to double than triple over three years (2.2x).

Most tumors stop growing after five years from diagnosis.

If your concerned about having active treatment in 30 years time when you're health is not as good at 65 years old, there's a few things to keep in mind. Firstly, in 30 years time you would expect treatment options to be better than today, MRI guided focused ultrasound, robotic surgery, a pharmacological solution or something else completely different is likely to be developed over the next 30 years. Something that leaves you better after treatment than before. Secondly, one of the neurosurgeons that I spoke to said age was not a factor, unless your frail. Finally, your quality of life is likely to be better in the mean time.

Keep in touch regarding growth.

 

 


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