ANA Discussion Forum
General Category => NF2 => Topic started by: BoedyGirl on May 22, 2014, 09:28:34 pm
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I was just diagnosed with Mosaic NF2 after having a 5 cm acoustic neuroma removed last August. I was wondering if anyone else has been diagnosed with this and their experience with it.
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I've been diagnosed with mosaic NF2. I have one acoustic neuroma, 2 meningiomas, and a spinal meningioma. They are all relatively small and only the AN is causing me any problems (steady hearing loss.) I also just had an inverted papiloma removed from my sphenoid sinus, but I don't think that had anything to do with my NF2 - when I asked in the Facebook NF2 groups no one else had had an inverted papilloma.
Most people I've heard of who have mosaic NF2 tend to have fewer tumors and fewer problems overall than people who have the 'full-blown' version. It also is often discovered much later in life.
What made them suspect NF2 in your case?
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Hi Susan,
They suspected NF2 in my case because I was 23 when they found my Acoustic neuroma tumor and it was 5 cm in size. I guess the average age for a spontaneous AN is 65 so they decided to test my for it but the NF2 cells were only found in my tumor and not the blood sample they took. I will have a CT scan done in November but my last few scans done after my surgery last August have been clean. I am very grateful to not have the full blown version, but it is hard not knowing what to expect in terms of how many of my cells actually have the mutation. After my AN was removed i lost all the hearing in my left year but thankfully I did not have any facial paralysis. How did they come to testing you for NF2?
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Boedy Girl, I've never had any testing done specifically for NF2. I found out years ago that I have mosaic ring chromosome 22, and that led to the NF2 diagnosis when I eventually had an MRI done (because of unexplained hearing loss) and they found an AN and a meningioma.
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Hi, I have recently been diagnosed with Mosaic NF2 from tumour material, which was removed 3 months ago from a unilateral AN. The last MRI (also 3 months ago) did not show signs of any other tumours in my body. I understand that this will likely mean a milder form of NF2, but I am struggling to find information about what this means for my future. Can anyone with a similar condition tell me what their experience has been like? Thanks a lot.
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Hi, I have recently been diagnosed with Mosaic NF2 from tumour material, which was removed 3 months ago from a unilateral AN. The last MRI (also 3 months ago) did not show signs of any other tumours in my body. I understand that this will likely mean a milder form of NF2, but I am struggling to find information about what this means for my future. Can anyone with a similar condition tell me what their experience has been like? Thanks a lot.
Vicki,
I have mosaic NF2, If you search for my posts here, you will see some of my experience. Did you get to talk to an NF2 specialist? I am not 100% sure, but I think it is possible to have a single tumor that has NF2-type damage to it without actually having NF2. With only 1 AN, so long as you have good followup care, including MRIs, I wouldn't worry. I have 1 AN, 4 meningiomas (actually, 3 now that one was taken out last year), and, apparently, multiple tiny spinal tumors. Other than the hearing loss on my AN side, I have no symptoms/problems from my other tumors at all :-)
Susan