Author Topic: NF2  (Read 3947 times)

samyz

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NF2
« on: September 07, 2013, 06:35:51 am »
Hello my fellow ANers,

I am new to this forum and have been reading posts and educating myself. I was diagnosed in July with a 2.8 cm AN in my right ear and will probably be having surgery in October. My question is about my son who is 19. Last night he said he felt fullness in his left ear and some ringing noise. Those were my first symptoms and I ignored it for years. I am very concerned about my son. How do i know if it is NF2? Any young patients out there? Please help.
2.8 cm AN removed by Translab on 10/29/13.

nftwoed

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Re: NF2
« Reply #1 on: September 07, 2013, 09:01:03 am »
Hello;

   "How do i know if it is NF2?" < Dr. would have to order an MRI.
   Best wishes in all. Thanks for posting the interesting timing and I hope you continue on posting through yours and your son's journey.
« Last Edit: September 07, 2013, 09:07:31 am by nftwoed »

terisandler

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Re: NF2
« Reply #2 on: September 07, 2013, 09:08:09 am »
The best thing to do is have him checked out by a doctor.  I would talk to the doctor who diagnosed you if you have this concern. Does your son have significant hearing loss in one or both ears?  There are many reasons for fullness an noisiness in ears. 

NF2 is found via genetic counseling and testing. Do you have more than one neuroma or meningioma?  If so a genetic counselor might suggest testing for you.  I just saw a genetic counselor because my follow up MRI (post CK surgery) showed a meningioma along with the AN.  I was told I do not fit the profile of NF2 though it might be mosaic NF2 caused by something other than genetics.  I was also told the only way to know for sure is to have the tumor biopsied.  Since you are having yours removed maybe you can ask the surgeon to send it for biopsy.
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

Kathleen_Mc

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Re: NF2
« Reply #3 on: September 09, 2013, 02:08:52 am »
If I were you I would have this problem your son is having looked into by your family doctor ASAP, it could be something simple, like buildup of wax, but on the off chance it is not you'd want an MRI done to rule out AN (I would think) so that if hearing can be preserved it will be.
I myself have often wondered if I have a mosaic NF2 as I did have a second AN, it grew in the same side as the first and the doctor's weren't able to tell me if it was just the original one regrowing (left a cell or two behind with the first surgery) or if it was a completely new tumor.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

 


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