Author Topic: Trying to make a decision  (Read 555 times)

DebraMIH

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Trying to make a decision
« on: September 21, 2017, 09:25:27 pm »
In 2012, I developed sudden sensory hearing loss in my right ear resulting in no useful hearing on that side. Unfortunately, an MRI showed an incidental finding of an AN on the left side where I have useful hearing.  I have been following with MRIs but lately the tumor has grown to 5.1 x 5.4 x 4.8mm and I need to treat.

I now have four different opinions from four different experts which makes this decision really difficult.  Obviously, hearing preservation is key as  I completely rely on that ear.

Mid fossa surgery has been ruled out as two risky due to it sitting in the auditory canal.

House Clinic is recommending Middle Fossa Decompression.  It sounds like a good idea, however, I am worried about leaving the tumor there because of the possibility of developing hearing loss, facial nerve impairment.... and if it continues to grow at the expected rate I would have to deal with a cm tumor in a place that already had surgery.

Gamma Knife was recommended, however, the studies show that there is a potential for hearing loss over the next 5-7 years.  The GK physician however, feels that the cochlear is far enough away from the tumor so that there would be minimal radiation getting to it.

Fractionated Radiosurgery was recommended today.  It sounds like a viable option because the oncologist feels that he could target the tumor and this method would best protect the cochlear. 

I am a 61 year old woman and other than this weird duo of ear issues, in good health.   Do you know anyone who had these surgeries more than a couple of years ago and had preserved hearing?

thanks!


DebraMIH

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Re: Trying to make a decision
« Reply #1 on: September 22, 2017, 07:00:00 pm »
I had another 'opinion' today. Actually doc was great as I asked him to review the 5 different opinions we heard from 5 different physicians over the past 2 weeks.   However, no consensus.  (Remember, I am deaf in the right ear and the schwannoma is on the left....)

doctor #1:  the tumor is sitting in the auditory canal and will cause deafness.  I suggest you get a cochlear implant asap. Once it really starts growing it will take off. Suggest mid fossa surgery.
doctor #2:  the tumor cannot be safely excised through mid fossa surgery as touching the auditory nerve will give you less than a 50% chance of maintaining hearing.  I suggest you do a decompression surgery now to allow the tumor more room to grow and less likely to affect hearing.
doctor #3:  Gamma knife surgery will provide the safest most efficient method to target the tumor. Best to get it now before it grows as there is a space between the tumor and the cochlear which will allow for less radiation getting to the cochlear.
doctor #4:  Fractionated radiosurgery would enable radiation to target the tumor while allowing the least amount of peripheral radiation to get to the cochlear.
doctor #5:  It isn't only the cochlear that can be affected by radiation, it is also the blood vessel feeding it and it will be exposed to radiation and potentially cause hearing loss within 7 years. 

New doc:  Not sure of the rate of growth. maybe it didn't grow as much as they thought from last year.  Worth waiting and watching another year.

Ugh!  have another opinion next week!

ANSydney

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Re: Trying to make a decision
« Reply #2 on: September 23, 2017, 05:45:47 am »
I've posted many references in this forum that the best way to preserve hearing for as long as possible is observation. Here's a handy one for you https://www.bhtinformatie.nl/pdf/ingrijpen.pdf

What has you growth versus time looked like and what did doctor last doctor say growth was? Did you get a CD of your MRI and look yourself; they come with an easy to use measurement tool.

The fact that every doctor has a different best treatment tells me something.

Joan Mingo

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Re: Trying to make a decision
« Reply #3 on: January 13, 2018, 07:53:01 pm »
I'm not a Dr and have only had AN for 18 mths but if it were me would do watch and wait. It seems from what have read in last 18 mths, hearing loss seems very likely with surgery. Just what I would do. Especially with hearing loss already in non AN ear! I have almost complete loss in AN ear and tumor not big so seems to be crap shoot on size vs hearing loss. I am getting hearing aid to assist my right ear which has small age related loss (60 yrs old). Want to preserve good ear as long as possible.

Good luck.
ANA diagnosed Dec 2016
14x4mm schwanoma left ear
75% hearing loss- 12% recognition remaining
Watch and Wait

 


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