Author Topic: Facial or Acoustic Neuroma?  (Read 5267 times)

staceycc

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Facial or Acoustic Neuroma?
« on: August 30, 2006, 11:59:11 am »
My father was recently diagnosed with an AN.  One day he lost all hearing in his left ear and was having balance issues for a few weeks previous. Around 20 years ago the left side of his face became paralyzed.  The doctors diagnosed it as Bell's Palsy.  Turns out when my dad went to see a doctor regarding the AN, the doctor seems to think that it is a Facial Neuroma and that he never had Bell's Palsy.  My father just finished the prednisone (17 days or so) and his hearing is completely back.  His tumor is around 2.2cm.  His doctor wants to surgically remove it, but in such a way that he will lose his hearing.  He feels he needs to do this due to the fact that the tumor may be attached to the facial nerve.  However, they do not know for sure how it is attached.  It would be a shame if he has to lose his hearing if he really doesn't have to...Has anyone had a similar experience?  Sorry for the rambling and bad grammar/spelling : )

jamie

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Re: Facial or Acoustic Neuroma?
« Reply #1 on: August 30, 2006, 05:36:27 pm »
Hi Stacey,

Your father should look into radiosurgery, and visit a specialist in that field. That option offers the highest chance of saving his hearing and it's well within the size range. Good luck. :)
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Captain Deb

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Re: Facial or Acoustic Neuroma?
« Reply #2 on: August 31, 2006, 05:15:36 am »
stacy--how old is your Dad?  Sometimes a patients age influences their treatment option.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
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staceycc

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Re: Facial or Acoustic Neuroma?
« Reply #3 on: August 31, 2006, 07:48:22 am »
He is 57 and otherwise very healthy.  We are going to see a 2nd doctor who works with the 1st doctor as a team.  My dad is hoping that maybe he can do the gamma knife, but, I'm a little nervous about that treatment.  I've read that the tumor can become cancerous....Also, the only problem he is having now is that he has no balance, his hearing has completely returned.  I've read that radiation usually doesn't shrink the tumor, so I don't think he'll get his balance back that way....

jamie

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Re: Facial or Acoustic Neuroma?
« Reply #4 on: August 31, 2006, 10:16:47 am »
I've read that the tumor can become cancerous....

That has happened in extremely few cases, and it has happened an equal number of times following surgery. That is nothing more than a scare tactic to pursuade patients.

Quote
I've read that radiation usually doesn't shrink the tumor, so I don't think he'll get his balance back that way....

Radiation actually shrinks the tumor in a good percentage of the time. I'm curious where you've read this information, if you read through the radiosurgery section here you will find many peer reviewed reports showing radiosurgery is very effective and offers your father the best chance of saving his hearing, the brain usually compensates for the balance issues in time, even if it doesn't shrink.
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

ppearl214

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Re: Facial or Acoustic Neuroma?
« Reply #5 on: September 04, 2006, 08:41:18 am »
Hi Stacy,

I have to agree with Jamie.  Please keep in mind that the radiation that is used for CK or GK is not a "disposable" radiation, thus, cancer scare is really not legit.  Many surgeons steer clear of noting radio-surgery options and vice versa.  Just seems to be a tactic used by many.

Many AN'ers will report a shrinkage in their AN size post radio-surgery treatments.  My last MRI showed no further growth (mine was growing at a good rate).  Yes, the once the AN is "killed" by the radio-surgery, it does remain there, but the DNA of the AN is dead, thus, no further growth.  As we know, there are no guarantees in life, but the chances of the tumor growing further is practically non-existant.

Your dad does sound like a terrific radio-surgery candidate, based on his age, the size of the growth, etc.  In speaking to many here, it's just a personal decision, keeping in mind all of his lifestyle issues.  Questions I would ask (if I were your dad) are:

1.  Should I try non-invasive vs. invasive?
2.  Am I confortable knowing that the AN would remain dead there vs. get this thing outta my head?
3.  What are potential after affects with all forms of treatments?
4.  How experienced is the team that will treat me (regardless if surgical or radio-surgery)

There are many more questions to be asked, but these are just a few that I asked myself as I began my decision making process.  Many here that have had micro-surgery maintain full, productive lives... same as many radio-surgery patients.  Some outcomes are not as good as hoped. As with any medical situations, there can be the good, the bad and the ugly.  You have a wealth of information available here in these forums to help further educate.

Anything I note here, please note it's only worth my 2 cents.  Hang in there... your dad is going to be fine! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

suelay

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Re: Facial or Acoustic Neuroma?
« Reply #6 on: October 04, 2006, 01:40:25 pm »
In addition to what has already been said, please make sure your Dad gets at least a few opinions and from doctors who deal with these issues all the time.  Many on this website have said it, but it's true and bears repeating--figuring out what to do with our tumors is one of the harder things we have encountered in our lives--often harder than whatever course is ultimately followed.  There is a wealth of information on this website regarding excellent neurosurgeons, centers, etc and information re places who perform various radiation therapies and surgical procedures.  Also, if you post an e-mail for good experiences with doctors in your area, people will reply if they know any.  Best wishes.   
L AN 16 x8 x8 mm
Retrosigmoid at Mayo Clinic Drs. Link and Driscoll on 9/25/06
Very good result