Author Topic: Early radiation of small ANs  (Read 814 times)

notaclone13

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Early radiation of small ANs
« on: January 22, 2019, 11:58:45 am »
There appears to be 2 schools of thought regarding treatment of small ANs, particularly those still confined to the IAC. One is to treat them early via CK or GK when smaller doses of radiation are required. However, there are many posts on the forum from people who had radiation on their smaller ANs (Buzneg and ewhitese come to mind) and seem to have rather severe problems with balance and dizziness afterward.  This may be due to the tumor swelling within the IAC after radiation.  There is not much room for swelling in the IAC which may cause the swollen tumor to put greater pressure on the neighboring nerves after treatment than it did before treatment.  The first doctor I saw, an ENT who specializes in ANs, recommended I get CK treatment on my my 8 mm AN right away. My hearing was practically normal at the time and he told me there was only a 50/50 chance of retaining my hearing after CK. He said not to base my decision on retaining hearing.  A got a second opinion from a neurosurgeon who advised me to watch and weight. He said you never move fast with these types of tumors.  Why not see if it is growing and if not, enjoy your hearing for as long as  you can.  Needless to say, I decided on the second approach like many others on this forum.

I have a question for those of you who opted for early treatment. In hindsight, do you wish you would have waited longer?

Cityview

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Re: Early radiation of small ANs
« Reply #1 on: January 22, 2019, 04:32:43 pm »
I think it's easier to have treatment if some or all of the hearing is lost because you are not making a direct decision that forces the loss.
If you lose hearing by waiting then you can always know it was the disease that did it - not the treatment. Everyone is different. That fact doesn't bother some people and they feel they can make that decision. I don't judge anyone.

This is the hearing we were born with - how we learned to communicate as a child - what we used to develop language and communication.
5 years ww
small AN

ANSydney

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Re: Early radiation of small ANs
« Reply #2 on: January 22, 2019, 06:15:42 pm »
Just my personal view, but I would research away, but not act until there are a series of MRIs that not only indicate change in size, but rate of change over time. Ideally, get 2 years of these (5 MRIs at 6 monthly intervals).

After two years you'll have much more knowledge and 5 MRIs to get a good picture on growth.

Remember, most tumors have already stopped growing by the time they are diagnosed ( https://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ).

Freelander

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Re: Early radiation of small ANs
« Reply #3 on: January 24, 2019, 09:18:58 am »
I agree with Cityview and ANSyney: be diligent, do your homework, ask questions, be informed, get those semiannual MRIs, listen to your heart and mind  (W&W is as much an action as is having treatment) stay personally and medically focused on what lays ahead.   

For w&waiters, a 'stable' for years, smallish tumor doesn't necessarily mean all is well.  I am reminded about this by a frequent poster on the Facebook AN Support Group who cites an experience that despite having a stable, untreated 4 mm AN for many years, the hearing was totally lost (neurotoxins from the tumor) and worsening vertigo (spinning), among other symptoms, is the daily norm.  It's all an individual decision, and there is no one best way, yet, to cope with this nefarious medial condition.   Maybe someday there will be a medical breakthrough, wouldn't that be grand?!

PaulW

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Re: Early radiation of small ANs
« Reply #4 on: February 07, 2019, 07:06:19 pm »
There are a number of opinions on this and ultimately it comes down to personal choice.

Having it radiated now....
Advantages...
One of the biggest advantages in my view is rarely discussed, and it is psychological.
Once a treatment has been chosen, your path is set, a lot less  wondering or worrying about tumour growth.
When your hearing declines, or you get dizzy, you know its a 2-3 Year Journey, and at the end of it you are done.
No more worrying if the symptoms are caused by the tumour, you have done all that you can do.
 
Appears to have an advantage in hearing preservation, in a subset of AN patients. Under 50, good hearing, small tumour size, and low radiation dose received to the cochlear.

Disadvantages
Treatment may have been unnecessary.. your tumor may be a non grower.
Risk of side effects
Possibility radiation speeding up hearing loss.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

 


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