General Category > AN Issues

new to the board, any advice helps.

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Clifton:
Hey,

My name is Clifton. I have just been informed this morning that i have an AN.

I woke up about 9 days ago with the sensation in my right ear like i was under water. I couldn't hear at all like i normally could. Frequencies were different from normal and i couldn't really understand talking.
After 2 days i went to a med clinic where they thought i might have some sinus congestion and she said that if it persisted to see an ENT.
So after another 2 days i was worried and set up my appt. He did some tests and said i've definitly lost alot of hearing and prescribed me some different meds *ie. steroids and famvir* thinking it may be a virus but also made sure to set up an appt for an MRI.
Well today was the day of the MRI and he broke the news to me...
I apologize if I am about to ask some stupid questions but im just in a little bit of shock at the moment.

The doctor told me that i have 3 options.
1.Observe
2.Surgery
3.Radiation.

He said that because of my age i shouldn't just sit back and watch it because it could continue growing, and he seemed to steer me into the "surgery" option more so than the radiation, again, because of my age probably.
The thing that bothered me the most was that he said i could potentially lose control over my facial expressions with the surgery option. Has this happened to anyone on here?
Im leaning more towards the surgery option, but the loss of my facial muscles scares me of course.

I am elated that i was able to locate this board so maybe some of you can help me shed some light on the situation. Im trying to be as optimistic as i can be, but its a little rough.
There are alot of questions that i want to ask but in order to not confuse myself i guess i'll just take them slowly.

Thank you so much for having me.'
God bless.

Clifton
San Antonio, Tx

Jim Scott:
Hi, Clifton:

I'm sorry you've been diagnosed with an acoustic neuroma tumor but I'm glad that you found this site and forum.  We're not doctors and can't offer medical advice but we can and do try to offer practical advice, based on sometimes hard-won experience. 

You’ll need to find out exactly what the MRI report said and what was the measurement of your AN.   If the tumor is tiny, ’watch-and-wait’ may be the most practical course to take – for now.  These tumors can stay dormant for years or grow very, very slowly.  They can also experience growth ‘spurts’.   My neurosurgeon speculated that my large AN might have been there for 10 to 15 years before growing large enough to cause symptoms.  This is not uncommon.

If the AN is small enough, non-invasive radiation treatment may be your best option.  It isn't guaranteed not to have complications, but it's easier than surgery.

The surgery your doctor mentioned is another, common, approach to removing AN tumors.  I had it, as have many others posting on this board.  Surgery certainly does have implications for facial paralysis and other assorted problems, but so does radiation.  Unfortunately, because the AN tumor usually originates on the 8th cranial (auditory) nerve, it can affect various otherr crucial nerves that control swallowing, blinking, facial expression, etc.  This doesn't always occur and I didn't suffer these problems, even with a relatively large (4.5 cm) tumor that was surgically 'cut down' and then, radiated over a 5 week period.  I'm fine, now, 14 months post-surgery.  Of course, we're all individuals and no responsible physician can or will guarantee the outcome of any procedure. 

Basically, having an acoustic neuroma tumor is a bit of a minefield.  You do have options, of course, but there are always going to be residual problems and emotional issues to deal with, sooner or later.  The good news is that it's a benign tumor (not cancerous) and is treatable.  You'll get through this.

Please browse the website ands take advantage of the excellent information available here, along with the collective wisdom of the forums.  You are not alone in this journey and we want to help you in any way we can so please, Clifton, stay connected and let us know how you're doing and what you're doing.  We want to know because we care.

Jim

nancyann:
Hi Clifton:  Glad to meet you.   I don't know how large your tumor is, but PLEASE, take a deep breath - you have some time no matter what.   Look into the different sites here - many questions you probably have are answered here - and any you want to know we're all happy to help you with.   I didn't know about this site until after my surgery - I am so glad you found us.
To answer 1 of your questions - I lost my faical function - & it has not been an easy road (to put it mildly) - but this is about you.
Yes, you are in shock.  But you're right, take it slow - no need to make any 'quick' decisions.

Please let us know the size of your tumor.  The surgeon says your at an age for surgery,  so you're probably NOT in your 70's - 80's & in poor health.  And if he/she told you you can observe, surgery or radiation,  you DO HAVE TIME.
In the physician section you'll see people ask about docs all over the country; the radiation section deals with just that, etc., etc.
We're all here for you, believe that.  So, take your time, ask away.
All the best,  Nancy
ps:  oh, & don't let any dr. rush you into ANYTHING.

Clifton:
thank you so much for the patience.

Dr. Perry in San Antonio is who will be discussing the situation with me in more detail.

The ENT who showed me the MRI's said that my tumor is very very small...he said 2.5 mm in length or so, which is why he says that i haven't experienced any numbing of the face or dizzyness.

I am going this thursday to Dr. Perrys office to discuss different routes to take. The ENT said he does about 1 per month, similar cases to mine here in san antonio.

Anyone in the area have someone to recommend?

nancyann:
Clifton:  I'm not in the area, but be patient - the way it works is as people log on, they look thru the sites, & will find your subject.  And, the good news :  YOU'VE GOT A BABY AN ! Lucky you(believe it or not) - you CAN play the 'watch & wait' - In fact, look at the pre surg, or search the words watch & wait - you'll find quite a few folks doing just that!!
Again,  so glad you found this site pre-op.   Best wishes,  Nancy

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