Author Topic: Gamma Knife Question...and AN Fears  (Read 2732 times)

oceantracks

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Gamma Knife Question...and AN Fears
« on: November 22, 2011, 12:02:26 am »
In looking through the posts up here, it seems like everyone has had, or is going to have, surgery. Yet when I research acoustic neuromas, it seems like the Gamma Knife method is used quite a bit, more and more. Is there a hard and fast limit on the size of which surgery MUST be indicated? A little confused.

I had posted up here a couple months ago about my situation. I have myself convinced that this is what I have....I'm going to have the ENT just schedule and MRI, as everything I've read says the hearing tests are not conclusive. The ringing in my right ear started two months ago, and I'm noticing that I'm saying "What?" a lot to my softer speaking children. I'm 60, and though I don't have any other symptoms, it seems in reading about this, that I shouldn't expect to have any other symptoms...yet. I just don't want to wake up a year from now with facial numbness or balance problems. If I have this, I want to avoid surgery at all costs if possible. So I guess I'm through avoiding the issue and putting it off to getting older, or listening to loud music daily (I'm a musician, and spend hours under headphones working).

I know it's really made me feel removed these last days....Thanksgiving, Xmas, they all seem like they are happening far away. I just dread the news I'm sure will come. I did speak to the woman who gives the hearing test at my ENTs office, and she did say that some people with unilateral hearing loss and tinnitus do NOT have an acoustic neuroma, so that cheered me up for awhile. But as the days go by, my ear just feels too weird. Ringing, sometimes slightly painful (very slightly), sometimes just a vague discomfort.

My situation is worsened by the fact that I only have Medicaid, and no doctor wants to touch it of course. Fortunately, my wife had hip replacement surgery at University of Miami, which does take Medicaid, and possibly he can refer me to the appropriate doctor for this. Since I work for myself, I have no "normal" insurance, so it's one of those "you better not get sick" type of existences.

Anyway thanks for letting me ramble tonight. Been a depressing day as I come to terms with this. I'm just hoping that if I have it, it's early enough in that the outpatient method will work for me.

Thanks
Tom

CHD63

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Re: Gamma Knife Question...and AN Fears
« Reply #1 on: November 22, 2011, 07:22:14 am »
Tom .....

I read back through your previous post and replies ..... and now this one.  Please try not to diagnose yourself, although I know that is easier said than done with the vast amount of information on the Internet (much of which is very misleading and somewhat inaccurate).

The chances of you having an AN with tinnitus and hearing loss as your only symptoms, is probably small.  As we said before, the only way to know for sure is via an MRI with contrast.  If you do not have insurance, you need to look into the cost of an MRI.  They are not inexpensive, especially one with and without contrast of the brain.

That being said, if the "not knowing" is interfering with your life in a major way, you need to find a way to have the MRI to know.

I am not a doctor, but from everything I have read (to protect my remaining good ear), if listening to loud music via earphones has been a significant part of your life, that alone could be the cause of your symptoms.  Please take a look at:  http://en.wikipedia.org/wiki/Tinnitus

To answer your question .....  generally speaking, most doctors will not recommend gamma knife or cyberknife for an AN over 3.0 cm.  The specific location of the AN dictates recommendations, as well.  New advances in the treatment of acoustic neuromas are changing many things so stay tuned for new ideas.

Let us know how you are doing.

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

mattsmum

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Re: Gamma Knife Question...and AN Fears
« Reply #2 on: November 22, 2011, 02:38:41 pm »
my first ent doc told me the chance of me having an acoustic with unilateral tinnitus and hearing loss was around 1% (ie of every 100 people he scans with those symptoms, around 1 will actually have an acoustic).
obviously someone has to be that one (yep, it was me...) but the good news is that most people with these symptoms do not have one.
how far are you with getting a scan? that is the only way to find out for sure. let us kow,
vikki
LINAC radiosurgery july 2011 for 1.5cm tumour (uk)

leapyrtwins

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Re: Gamma Knife Question...and AN Fears
« Reply #3 on: November 23, 2011, 07:13:44 pm »
Tom -

lots of people choose radiation (GK and CK), keep in mind that not all AN patients post on the Forum.  And also, over the course of the past few years we've had lots of members come and go - some old-timers currently spend more time on Facebook than they do here.

Radiation is a very good choice for lots of people.  I was given the choice of GK or surgery by my doc and chose surgery, but that was just my personal preference.

Typically docs will radiation an AN that is less than 3 cms, but the location (where the tumor resides) is also a factor.

Radiation is much less invasive than surgery and if you should be diagnosed with an AN, I urge you to look into it.

Even if someone ultimately chooses surgery, I think it's part of the "due diligence" of having an AN to investigate all the options out there; including watch & wait (works very well for some).

But first things first.  Get a diagnosis from a doctor; self-diagnosis isn't a good thing.  Cheaper than paying a medical professional, but often not accurate.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways