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Author Topic: not a "normal" an  (Read 3815 times)

kzepol

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not a "normal" an
« on: March 10, 2011, 10:39:42 pm »
Finally saw dr to review new mri and ct scan. My AN is 7mm x 5mm and it's in the cochlea.no balance or facial nerve issues but it will grow so I want to proceed with surgery. Anyone else heard of this type of AN - intra cochlear?
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Suu

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Re: not a "normal" an
« Reply #1 on: March 11, 2011, 12:15:12 am »
Hi,
I hadn't heard of it but I Googled it with using the words - intracochlear acoustic neuroma - and came up with a lot of information.

Where are you and have you faith in your doctors?

All the best and I hope we can help in some way.

Suu xxoo
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4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

sunfish

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Re: not a "normal" an
« Reply #2 on: March 11, 2011, 08:47:21 am »
Glad and sad to welcome you to our forum!

Read all the info on this forum and website before you make a decision.  The ANA recommends that you get evaluation and treatment from doctors who have significant experience with this disorder.  This recommendation is accurate, in my experience.  The only thing I would have done differently, in my case, is to have followed this advice.  I had treatment locally, and I like my doctors.  However, as side effects/symptoms crop up, I've had difficulty finding anyone to help, who has good experience with ANs.  In the case of radiation treatment, you can wind up getting your AN zapped by people who are right on target, but who have little experience dealing with the aftermath.

Your tumor is comparatively small, and these grow slowly.  So take a deep breath, try to relax, and make a good, informed treatment decision.
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Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

CHD63

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Re: not a "normal" an
« Reply #3 on: March 11, 2011, 09:05:02 am »
Karen .....

Yes, ANs are typically slow-growing, but an intracochlear AN is starting in a much smaller space so you probably do need to stay aware of any changing symptoms. (Remember I am not a doctor.)  Otherwise I whole-heartedly agree with the previous posters, you need to do your homework for the best possible physician to treat you.  ANs are generally considered to be found in 1 in 100,000 people, but intracochlear ANs are less than 10% of the cases of acoustic neuromas.  Therefore, you are in the rare of the rare category and you want someone who has as much experience with them as you can reasonably find.

Just my thoughts on what I would do ......

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

kzepol

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Re: not a "normal" an
« Reply #4 on: March 11, 2011, 09:38:46 pm »
I sure look forward to your replies. I will see Dr House in 10 days for his opinion although it's costing me $150+, I respect and trust him more than my Kaiser dr at this point. So, more waiting but feel I have gone far in a few weeks as a result of finding all of you. Please keep posting, karen
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