ENT Drs. - attitudes to AN's??

[Esperanza]

I have now been told that all my symptoms except for balance and hearing loss i.e. tinnitus, fullness/pressure, sometimes stabby ear pain behind the ear etc..) are nothing to do with the AN!!!!
BUT that if it grows suddenly or has a bleed I will know as the tinnitus/fullness/pressure (and balance!) will get noticably worse... 
so, I wonder,  if it's removed or it is treated and shrinks some of the symptoms may get better  

No, it apparently "doesn't work like that"

How does it work then?  Does anyone know? 

 

[Jim Scott]

Esperanza:

Understand that I'm not a doctor, but I will offer my non-physicians opinion that with surgery and/or radiation, the AN symptoms you mention (fullness, stabbing pain) should be alleviated.  Tinnitus and hearing loss will (very likely) not be appreciably diminished and the hearing loss, specifically, will be permanent.  The level of tinnitus may change for the better but that cannot be guaranteed - it could intensify.

I would trust a neurosurgeon's assessment regarding what AN symptoms may be alleviated with treatment over the musings of an ENT specialist, based on the fact that most ENT physicians do not have much experience with acoustic neuromas.  Unfortunately, the kind of 'advice' you're getting from an ENT tends to confirm that opinion.  Of course, there are always exceptions but I suspect this ENT is not one of them.  You need to find a specialist who understands acoustic neuromas and can offer you better-informed advice. 

I was 'lucky' and bypassed the ENT route, going straight to a neurosurgeon, because when discovered, my AN was very large and pressing on my brainstem so I needed a neurosurgeon, fast.  No time to fool around with an ENT doctor.  I found an excellent neurosurgeon and he performed the surgery within a few weeks, then helped supervise my follow-up radiation (FSR) treatments.  I still see him on a semi-annual basis.  See my signature for how this all worked out.    I hope you'll have a similar experience.

Jim

[Sam Rush]

As a doctor and AN pt., I can tell you that the way" it works "  is that none of your symptoms could be alleviated by treatment, and some could get worse. I didn't have tinnitus until 1  1/2 yrs AFTER  my surgery.  So what is the reason for treatment??   To prevent damage to other cranial nerves, to prevent pressure on brainstem, to prevent hydrocephalus, hopefully to preserve some hearing if any left, and to prevent death. Although it is a benign tumor, it does grow and the skull is a closed space with barely enough room for our brains, let alone a growing sticky tumor.

Fortunately, it is (usually ) slow growing and we have plenty of time to plan for treatment, and once treated, the vast majority of AN ers can confidently get on with our lives, as evidenced by the people on this forum.

[Esperanza]

This must be one of the few conditions that can leave some people far worse off after treatment??!
Fortunately I have spoken to someone who had surgery on a large AN who does have a very positive outlook and very few after effects.  That'll do me for now!

Ta muchly.

[cherrypiper]

what happened with me is my tinnitis was caused by the AN. after a few years i lost all my hearing in the right ear.

so we did the mri, found the tumor, about the size of a nickel. They went in and got it on Dec.3rd 07 and now we are waiting for my facial and eye paralysis to ligthen up.

But the BIG deals for me was , they got the tumor, and it wasnt cancerous (most arent by the way).

One does not have to wait for bleeding and more severe balance lose to have the surgery.