Official NF2 roll call

[Susan A]

Jimmy,
I am sure it's because of the two ANs that they say you have NF2 even though the tests they did were negative. I would guess you are like me - the genetic damage is 'mosaic' - not in every cell in your body. Dr Plotkin at Mass General explained that there wold be absolutely no point in testing me.

What are your doctors recommending for treatment now?

Susan

[MinhVietNam]

Hi everybody, I am NF2er, I loss all hearing in my left ear and the tumor had been removed 5 years ago. But 2 year ago I got the second in my right side (750 mm3). I was CK and after that my hearing almost recovery 1 year later. But now I sometime I can't hear anythings, my recent MRI test show no sign of the tumor so I thing the radiation worked (may be I am a special case?). I wonder if radiation have been destroying both the tumor and my neuro?

[Mark H]

It's been a while since I was here. My last computer crashed some time back and I kinda forgot I was a member here. I have NF2 but my symptoms are pretty mild. My AN's are only around 2mm each, just big enough to really detect. I have tinnitus on both sides, and some balance problems. Enough that the #1 rule where I work is that I'm not allowed to even look at a ladder. My own #1 rule is don't get caught. Hee Hee.
Mark

[Dealy]

Been a while since I have posted here. I am an NF2. First AN in 1988-it was 1.5Cm in left ear. had in surgically removed in Kansas City. Left me deaf in that ear-my hearing nerve was removed. In 2005 my face on right side goes numb at work-subsequent MRI finds a 2.5CM on right ear. Had 25 sessions of radiation at Johns Hopkins in 2006. I have had an MRI every year since. Last MRI showed that the tumor on right side is still stable. MRI showed a nodule on the Left Trigemenial Nerve. I decided on FSR Radiation after hearing of an NF2 lady in Texas, where radiation worked and shrunk both her tumors. She had FSR (5 sessions) in each ear at Johns Hopkins. I am totally deaf in the left ear since my hearing nerve was removed. I have around 30% left in the right ear, and can hear yet with the use of a hearing aid. My hearing has remained stable since my initial FSR treatment in 2006. So as far as I am concerned-it was worth to have FSR. I far as giving advice too someone else- guess one has to weigh the pros and cons. I will be 63 years old in February.-God Bless-Ron   P.S. Hi Cheryl R.

[Cheryl R]

Ron, Good to hear about how you are doing!     I so hope you can always keep what hearing you do have.      April is my MRI time andso far seem okwith the hearing I had brought back  in 2008.   It gets hard to to not wonder with new noises here and there and is there is a new symptom now and then.      I just hope the being older is in our favor as supposedly it can be for less chance of tumor return or growth.     I will be 60 this summer and not excited over the age but am if means no more surgery ever! 
I hope you are having as good a winter in Kansas as we are in Iowa!       Always good to hear from you!
                                             Cheryl R

[nftwoed]

Hi Minh;
  I believe sometimes those who are treated will experience an improvement in hearing. As radiation has potential to kill cochlear ciliary hair, then deafness may occur some months later.
  But, the natural course of an NF-2 caused AN is that, unlike a normal AN, the NF-2 AN has the ability to impact, and grow within nerves.
  In a sense then, oftentimes the nerves become part of the tumor.
  I hope you can understand this as I'm unsure how good your English is.

 

Hi everybody, I am NF2er, I loss all hearing in my left ear and the tumor had been removed 5 years ago. But 2 year ago I got the second in my right side (750 mm3). I was CK and after that my hearing almost recovery 1 year later. But now I sometime I can't hear anythings, my recent MRI test show no sign of the tumor so I thing the radiation worked (may be I am a special case?). I wonder if radiation have been destroying both the tumor and my neuro?

[nftwoed]

Hi Jimmy;
   Remembering that NF-2 does not require bilateral ANs for Dx... Basically, it means "any two of" tumor types which might occur anywhere in the body.
   The aggressiveness of the tumors at your age are also a sign of NF-2. One might remember blood tests are only about 60% accurate at this point.

I am unsure.I am 55 now.When I was five I had a Glioma tumor removed from my Left optic nerve(they removed the eye and optic nerve).In 1999 I had a 2.2 cm AN radiated at Johns Hopkins Hospital.Shrunk no regrowth.In 2006 I had a 2.6 cm left side AN treated with 30 sessions.It is now regrowing and pressing on Brain Stem.I was tested for NF II and the results were negative but all my Dr's say I have it.

[producer]

Negative NF2 test often confirm 'mosaic NF2'.  It is a milder form of NF2.

Ive been diagnosed (6 months ago) with mosaic NF2.  I have a 10mm x  6mm x 6mm left side VS with moderate hearing loss and tinnitus.  I also have a 15mm x 5mm hypoglossal tumor with no symptoms.  I addition i have 3 tiny spinal nodules...about 6mm each.

Odd thing is i also have hearing loss and tinnitus on the right although no VS on that side..the theory (and doctors agree) is that I must have some noise induced hearing loss  from being a producer in front of loud music for the past 15 years!If anything, this noise induced hearing loss mustve made me notice the 'overall' hearing loss on my left side earlier than if it had been just the hearing loss from the VS..

I too had a negative genetic testing for NF2 which confirmed my doctor's diagnosis of mosaic NF2.

So I guess you can add me to the NF2 list 


chris

[Dealy]

I have been having stabbing pains in the top of my head for the last couple of months. Not due for an MRI till June of this year-will be 6 years post FSR Radiation-25 sessions at Johns Hopkins. My wife called Johns Hopkins yesterday the 25th of January. They think the stabbing pain is caused from my Trigemenial Nerve on that side. Also Last year they confirmed I have nodules-not tumors on my left Trigeminal Nerve. They told my wife these nodules are characteristic of NF2's. I did not know that. They indicated in most cases they remain nodules-but in other's they may form a tumor. Anyway- going too move my MRI up too late February so we can see what is going on in that noggin of mine. God Bless All.

[Silver Sonnet]

Wow--lots of new "faces" since I was last here!  I'll have to keep a better eye on this place

Dealy, good luck with your MRI.  Be sure to let us know how it goes.

[Lou]

unfortunately I think I qualify

[Silver Sonnet]

Welcome, Lou

I've heard some conflicting reports about your medical system; here's hoping it works well for you.  One element that helps is that our tumors are usually slow growing, so hopefully you'll have time for the system to catch up to you.