Author Topic: Well not an acoustic neuroma but a trigeminal schwannoma  (Read 3230 times)

darkorchid12

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Well not an acoustic neuroma but a trigeminal schwannoma
« on: February 10, 2015, 01:51:52 pm »
I dare you to say that five times fast.  In any case this is the first result of a 2nd opinion from Barrows Institute.  I am not sure I belong is this group anymore?  I don't really have hearing loss, do have tinnitus, dizziness, loads of headaches.  Their recommendation was for micro surgery which they said the opening would be behind the right ear and about the size of a nickel. They also said it would be a two day hospital stay, no response about recovery.

Well I will wait for the other consults to come in any thoughts?
15 mm x 10 mm x9 mm 12/18/14
Working on possible CyberKnife @ Stanford
Diagnosed on incidental finding.

ANGuy

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Re: Well not an acoustic neuroma but a trigeminal schwannoma
« Reply #1 on: February 10, 2015, 03:00:14 pm »
I'm curious as to how they determine what it is.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

CHD63

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Re: Well not an acoustic neuroma but a trigeminal schwannoma
« Reply #2 on: February 10, 2015, 05:37:25 pm »
Hi darkorchid12 .....

Although I had a vestibular schwannoma (aka acoustic neuroma), not a trigeminal schwannoma, I did have trigeminal neuralgia 20 years ago that was successfully treated through microvascular decompression at the brainstem, via retrosigmoid approach.

The 12 cranial nerves all originate at the brainstem, in very close company with each other.  Therefore a schwannoma on any of them could include symptoms for the others, depending upon its size and specific location along the nerve.

Since your situation is very rare, I would search diligently for experts in specifically treating trigeminal schwannomas.  Not all neurosurgeons are equally well trained in treating skull-based tumors or cranial nerve tumors.

You certainly can remain in this group, even if it does turn out to be a trigeminal schwannoma ..... there are many similarities between them.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

darkorchid12

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Re: Well not an acoustic neuroma but a trigeminal schwannoma
« Reply #3 on: February 10, 2015, 06:24:28 pm »
Clarice if no one has said it before, you are a treasure.  Thank you for you kindnesses. 

The explanation I got about my results was because apparently none of the tumor is in my ear canal.  It lies along the trigeminal nerve and sticks out somewhere in there, some cave I think.  Makes me want to study the skull and bones a lot more closely.  I have done scientific drawings of skulls of animals and now I think I need to study human!

I must admit, in spite of having to get something done, I  am not nearly as freaked out as in the beginning. But the show isn't over yet, this I know. 
15 mm x 10 mm x9 mm 12/18/14
Working on possible CyberKnife @ Stanford
Diagnosed on incidental finding.