Author Topic: NF2 has anyone been diagnosed with this disease?  (Read 13387 times)

er

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Re: NF2 has anyone been diagnosed with this disease?
« Reply #15 on: March 15, 2007, 08:56:57 pm »

 I am a victim of an Acoustic Neuroma 2
 I am a female of 56. On March 28,2005 I had a medium tumor removed from my left side of my brain. My husband and I figured it took 5 years to get the size it was.
 My surgery was very successful but I did have a few problems from the tumor.
 I'm not sure what to say but I know that my surgeons and the hospital I stayed in were awesome. I did not have any pain from the surgery just the norm, sensitive to light, eye lid didn’t want to close so they placed a gold piece in my eyelid, no tears, hearing loss, off balance, every one asked if I had ballpalsie, oh and a very bad taste in my mouth. I still suffer from a lot of these problems besides short-term memory.
Eve

ppearl214

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Re: NF2 has anyone been diagnosed with this disease?
« Reply #16 on: March 15, 2007, 09:00:00 pm »
HI eve and welcome.  I'm glad to see you see and hope you are well.

When you say you are an AN2... as in NF2? they have found more than one AN growth in you? Since you had the surgery already on your left side, did they find one on your right side?

short term memory seems to run amock around these parts, so if I forget your name, I'll just use my dr's note.... :)

Again, welcome
Phyl

(P.S.  I am a firm believer that we are not victims of AN's... we are true "survivors", just like you! :) )
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

er

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Re: NF2 has anyone been diagnosed with this disease?
« Reply #17 on: March 22, 2007, 07:04:10 pm »
Hi Crystallady,
I want to say hello first and good luck.
The information that I received was that it is genetic. So like you, I got nosey. My medical book describer Acoustic Neuroma  as  a noncancerous tumor acting the vestibulocochlear (acoustic) nerve, which connects the ear to the brain. Ages most common between the ages of 40 and 60. Which I'm 56. It's genetics one type runs in families.  The cause of acoustic neuroma is unknown but, if the tumor affects both acoustic nerves, it may be associated with the inherited condition neurofibromatosis 2 in which multiple tumors grow from the sheaths around nerves. Adults with neuroibromatosis 2 may develop tumors on the acoustic nerve, which can affect hearing, but rarely develop tumors on the skin. 
I don't know if that helps, but I know I have both neurofibromatosis 1 and neurofibromatosis 2 and I get it from my dad.

er

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Re: NF2 has anyone been diagnosed with this disease?
« Reply #18 on: March 25, 2007, 02:18:11 am »
Hi ppearl 214

What I meant to say was not only did I have and acoustic neuroma on the left side and Neurofibromatosis on the surface of my skin which I understand that neurofibromatosis 2 may develop tumors on the acoustic nerve.
My findings state:  There is a mass identified in the left cerebellopontine angle, 1.5x1.1 cm in transverse and approximately 9 mm in craniocaudal dimensions. The mass extends into the internal acoustic canal.  Findings are suggestive of an acoustic neuroma.
and my real name is Evelia Roper , Eve for short

barbjo

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Re: NF2 has anyone been diagnosed with this disease?
« Reply #19 on: July 13, 2007, 06:22:48 am »
NF2 has been thrown out alot around me, but no doctors have given me a definate one way or the other.  Ten years ago I had a sizeable spinal tumor removed, taking me 7 months to learn to walk unassisted.  Three years ago I had a acoutic neuroma removed.  What are the test for NF2?  I am worried, as I feel the "other shoe" will drop on me again.
Thanks!  Barb
 

 


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