Author Topic: Possible NF2?  (Read 4106 times)

ajb010

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Possible NF2?
« on: March 01, 2013, 02:46:01 pm »
I was diagnosed with a 5mm acoustic neuroma in November of 2011. At this time, I was 18. I first scheduled my middle fossa surgery through Dr. Day at UAMS, but he later had to reschedule due to himself having to get surgery on his spine. This sent a red flag to me because I was already choosing between UAMS versus the House Clinic. I initially chose UAMS out of convenience but then ended up having my middle fossa surgery at the House Clinic (thankfully!) in March of 2012 and I am almost at the one year mark. This obviously got me looking back into subject which is when I stumbled across NF2.

From what I have read, NF2 is much more common when the patient is younger and already been diagnosed with an AN? No one in my family history has this, but my mother has Trigeminal Neuralgia, and my father has had multiple surgeries for cholesteatomas. To me, I feel this has to be interrelated in some way? Should I try to get the genetic test for this reason?

Either way, shouldn’t my doctors have told me that due to my age, this was some sort of risk? I mean, this was not even mentioned. I felt like I was done with that chapter of my life, and then just reading a few articles online made me feel how I felt when I was initially diagnosed. I have my first follow up MRI at the beginning of April. Obviously, I am probably worrying myself about something that is not there, but is there anyone else who was diagnosed with their first AN at a young age, and then later diagnosed with more?

Thanks and xo.

Afton
Diagnosed 5mm AN 11/2011
Middle Fossa Surgery @House 3/2012
Bells Palsy 4/2012-10/2012

nftwoed

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Re: Possible NF2?
« Reply #1 on: March 02, 2013, 10:57:54 am »
Hello;

   My understanding is under 30 years of age raises an NF-2 suspicion esp. if there is another tumor in the body of some type, or a relative had an AN. Think "any two of" NF-2 type tumors. E.G. meningioma and AN.
   Cholesteatomas have to do with calcium deposits in the middle ear often more common to aging men. I doubt the relationship. As a layman, I can't see a relationship to TN either.
   Even if you were tested for NF-2, blood tests are only about 60% accurate.
   MRI is the best diagnostic tool as a contralateral AN is likely to eventually develop if you are NF-2, but, Tx may or not be indicated. My ANs occurred 17 years apart. ( I'm NF-2 )
   Below, is copied from: http://www.nf2is.org/diagnosis.php

 As of 1997 the diagnostic criteria for NF2, known as the Manchester Criteria, requires one of the following three conditions to apply:

•Bilateral Vestibular Schwannoma (Acoustic Neuroma)
•1 or more 1st degree relative with NF2 + unilateral Vestibular Schwannoma at <30 years
•2 of the following: Meningioma, Glioma, Schwannoma, Juvenile Posterior Lenticular Opacities

nftwoed

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Re: Possible NF2?
« Reply #2 on: March 02, 2013, 11:14:04 am »
 ... and to remember, about 6% of those with 1 AN, go on to develop another, contralateral AN.

Susan A

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Re: Possible NF2?
« Reply #3 on: March 20, 2013, 07:26:47 pm »
I think nftwoed covered that pretty thoroughly! If I were you, I'd want to check in with an NF2 specialist. I know the docs at House are good, but I don't know if there's someone specific to ask to see there who is more specialized in NF2.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

nftwoed

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Re: Possible NF2?
« Reply #4 on: June 17, 2013, 01:53:15 pm »
Hi;
   Well, what was the outcome? Anyone know? I had my first dizzy spell at 19 before there existed CT or MRI or even a name as NF-2. Drs. had it inaccurately mixed with NF-1 ( Von Recklinghausen's Disease on a different chromosome 17 ) Then, turned up an AN at 27, AND, an abnormal ENG on the right the same time. The 'R' AN was MRI'd at 44.

 


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