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Author Topic: Intralabyrinthine Schwannoma  (Read 4959 times)

Bman

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Intralabyrinthine Schwannoma
« on: June 11, 2013, 11:41:31 am »
I have been Diagnosed with Intralabyrinthine Schwannoma in my left ear.  I can not seem to find out much information about this and was hoping someone here might be able to help out and provide some information on this topic.

Thank you for your help.

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Jim Scott

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Re: Intralabyrinthine Schwannoma
« Reply #1 on: June 11, 2013, 12:45:12 pm »
Hi ~

This link may help you understand more about an Intralabyrinthine Schwannoma than anything I might have to offer.  I hope it helps.

http://www.dizziness-and-balance.com/disorders/tumors/intralabyrinthine%20schwannoma.html

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

622Hath

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Re: Intralabyrinthine Schwannoma
« Reply #2 on: October 05, 2013, 01:45:34 pm »
I have been diagnosed very recently with this unusual form of vestibular schwannoma and would also appreciate hearing from any others with this condition! I am currently a watch and wait with a very small tumor.
Thanks in advance for any additional thoughts or information.
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thedales7

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Re: Intralabyrinthine Schwannoma
« Reply #3 on: October 10, 2013, 12:42:35 pm »
Hi BMAN...
 I too have an interlabyrinith schwannoma... inside my cochlea. I guess we will learn together! 
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3mm? (I was in such shock i can't remember! )intracochlear AN/ intralabyrintnine schwannoma right ear
60% low and mid frequency hearing loss
Watch and wait

MHJ

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Re: Intralabyrinthine Schwannoma
« Reply #4 on: October 15, 2013, 08:38:03 am »
I too have a Cochlea Neuroma. I was diagnosed about four years ago.  Trouble with tinnitus, hearing loss and slight balance issues. I have a followup MRI in December.  This is very rare, literature search states about 80 known cases.  Being seen at Mass Eye and Ear with Dr. McKenna, he has only seen a few like this.  These tend to be small, but as we all know the small ones can cause significant problems.  Keep the faith.
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thedales7

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Re: Intralabyrinthine Schwannoma
« Reply #5 on: October 19, 2013, 12:04:17 pm »
Quote from: MHJ on October 15, 2013, 08:38:03 am
I too have a Cochlea Neuroma. I was diagnosed about four years ago.  Trouble with tinnitus, hearing loss and slight balance issues. I have a followup MRI in December.  This is very rare, literature search states about 80 known cases.  Being seen at Mass Eye and Ear with Dr. McKenna, he has only seen a few like this.  These tend to be small, but as we all know the small ones can cause significant problems.  Keep the faith.
Wow... I feel special! Lol. Are you on watch and wait?  What sort of treatment have you received?
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3mm? (I was in such shock i can't remember! )intracochlear AN/ intralabyrintnine schwannoma right ear
60% low and mid frequency hearing loss
Watch and wait

622Hath

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Re: Intralabyrinthine Schwannoma
« Reply #6 on: October 22, 2013, 04:41:42 pm »
I am also seeing Dr. McKenna.  I have not had significant hearing loss but have had major balance (vestibular) problems; luckily the other side has taken over and I am still playing competitive tennis after some adjustments and balance therapy.

Are any of you going to the Boston support group meeting on Nov 14th?  I plan to be there and would like to meet any of you who might be in attendance!
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