Author Topic: Advise Please  (Read 10321 times)

Blw

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Re: Advise Please
« Reply #15 on: December 08, 2016, 10:36:00 pm »
A combination of literature and experience here would likely say House for surgery, Pittsburgh for Gamma Knife, Stanford for Cyber knife. There are also many other places that are outstanding, make sure you pick one that specifically mentions that they treat these. <http://www.neurosurgery.pitt.edu/centers-excellence/image-guided-neurosurgery/acoustic-neuroma>
<https://stanfordhealthcare.org/medical-clinics/cyberknife-stereotactic-radiosurgery-program.html>

MontanaWriter

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Re: Advise Please
« Reply #16 on: February 22, 2017, 10:36:35 am »
I, too, live in Montana--I'm the same age and also received somewhat dismissive treatment by the local otologist/surgeon.  I also sent my MRI to House Clinic.  They responded, on the other hand, very professionally.  I've decided to have surgery there on March 1st.  If you have Blue Cross insurance here in Montana, it will consider any medical work done by House as in-network.  They are an alternative to Mayo.  That said, a lot of Montanans do go to Mayo for other medical problems.

Sheba

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Re: Advise Please
« Reply #17 on: February 26, 2017, 02:29:14 pm »

lmonroe, 2.5cm is considered large, and your facial symptoms are not a great sign.

microsurgery is a pretty big deal, but if performed by a team with a lot of experience specifically with ANs, you can have a great outcome.  the larger the tumor gets, the higher the rate of complications after mainly involving facial paralysis - temporary or longer term. 
ANA site has lists of surgeons around the US who do a lot of these surgeries.

have you confirmed if yours is growing or not (i.e. 6 month followup MRI)?  quite a few neuromas are stable or even a few are shrinking, in which case wait & watch could be a good option. 

I was personally not comfortable with the idea of radiation, just as many of the folks who choose radiation are not comfortable with the idea of microsurgery.  it comes down to personal views and preferences.
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

ANSydney

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Re: Advise Please
« Reply #18 on: February 26, 2017, 05:38:37 pm »
Sheba, your commentary here and in other entries is good and useful, however it is interesting that a 2.5 cm tumor is described as large.

In the literature, I've seen 2.5 cm described as small, medium, moderate and moderately large.

Small: https://www.cambridge.org/core/services/aop-cambridge-core/content/view/222576A67CCE48C1EF730C11F57F0A9D/S0317167100035526a.pdf/div-class-title-acoustic-neuromas-management-of-204-cases-div.pdf
Medium: http://www.mayfieldclinic.com/PE-Acoustic.htm and https://link.springer.com/chapter/10.1007/978-4-431-53942-1_3
Moderate: http://american-hearing.org/disorders/acoustic-neuroma/
Moderately large: "New and Modified Reporting Systems from the Consensus Meeting on Systems for Reporting Results in Vestibular Schwannoma"

It could even be argued that a 2.5 cm tumor could be classified as large, since some say >2.5 cm is classified as large.

So, a 2.5 cm tumor could be described as small, medium, moderate or moderately large (or even large)!

I guess you could call it what you want, but the good thing is that at 2.5 cm all three options are available to you (surgery, radiosurgery and observation).