Scared

[mindyandy]

Hi everybody. I just turned 30 years old. I was dx in Sept. 07 with AN on the right side. Left side showed nothing. I am awaiting CK. While I am awaiting I have noticed signs on AN on my left side. Same symptoms as with my other AN. I have the cafe a lait birthmarks. I am very scared that I might have NF2. I have not heard anybody in my family having this. On Monday I am going to ask my dr. to do an MRI and a scan of my spine. I have a few questions for all you experienced NF2'ers.
1. How old were you when you found out you have NF2 or AN?
2. How are you today.
3. How common is it to get spinal tumors? Are they benign?
Please let me hear your experiences.

Thank you
Mindy

[Cheryl R]

     In answer to your NF2 survey

      1.     49 when first found  riight sided AN in 2001 with mid fossa surgery. Loss of hearing prior to surgery with only a 1.2 cm tumor.         51 when found tumor on the left in  2003       I am 55 now.               Had facial neuroma on right which was a new tumor and not a reoccurance and surgery with nerve graft with nerve  from neck with return of facial function so look ok.   This was in 2006.                  Watching tumor on left but the hearing is going.    Will try cochlear implant when hearing is gone.     
   2.    No signs of spinal tumor when spinal MRI done in 2003.           Spinal tumors are benign.   Their location is what causes the problem when presses on nerves. 
      I have one cafe du lait spot.      I have read that over 6 is the NF2 indicator.         
                                              Cheryl R

[Dealy]

I was 38 years old when they found my first AN on the left side at 1.5CM heading for the brain stem. Had in surgically removed-left me deaf in that ear. No evidence at all of being an NF2 or signs of other side tumor. In 2005 right side of Face when numb (Age 56) at work Subsequent MRI showed a 2.4 or 2.5 CM on right ear-so obviously it did not grow overnite being that size. Had dradiation in 2006-losing more hearing in the right ear but tumor is showing signs of dying. I have skin tags under my armpit and little tiny growths on my face that local neuro has indicated that these are marker's for NF2. I have had these for years with no Doctor ever pointing this out too me. Cafe Spots-some on the arm but Neuro says these can be related to age not NF2. Scanned for tumors on Spine in 2006 but that is also negative. You can also get Periferial Neuropathy from Nf2. My feet are constantly numb-Doctor's say this is an attribute of Nf2-also have Cataracts in each eye-also a side effect of Nf2. Yes- I would suggets another MRI because their are different forms of NF2. Some are latent and other's are more aggressive. My neuro has related that you can have NF2 but not necessarily Brain Tumors. Hope you get a resolving answer to your concerns to relieve some of your anxiety. Keep us posted-Please. Thanks_Ron

[Mark H]

I was around 50 when the MRI's fnally showed "something." They were so small they weren't sure what they were. Finally this year (maybe last year) they got arounf to calling them acoustic neuromas. I've had the symptoms for a long time and suspected NF2, so it was no surprise. I have some other tumors in my head but they don't bother me. I just had a full spine, neck, and head MRI done last weekend since the tumors at the C1-2 level are causing a LOT of pain right now. I've called tice to get the report but they haven't called me back yet.  My day off is Tuesday so I'll just go in and get the silly thing. I don't think it will show anything new (they never do) but this pain is getting real old. Right now I've got to stop typing after every couple words. I'm not worried about this, but it would be nice to ratchet the pain back a notch or 2. 
Mark

[JTomes]

I am 51 and was diagnosed on Oct. 21. I too know the feeling of being so affraid. Doingit 1 time is bad enough, but I don't know how I can handle 2. My surgery has been scheduled for Jan 8th. I am having some major problem right now, but ope that haing the first one out will help. I am having headaches from the one on the left. That will be the 2nd to go. i wish you luck. You are in my prayers.

JT

[mindyandy]

Well I still don't have any answers. I had a MRI on head Sunday. I still only have the 1 AN on right side. Nothing found on left....phew. So far that is good. The strange feeling in left arm and heavy feeling in left leg are still there. I have a neck and spinal scan today.....longest hour 1/2 let me tell ya. So awaiting results hopefully I will get within the next couple of days. I'm praying that I am not NF but I do have the cafe a lait birth marks. Well I thought I'd update everybody my situation. I will let you know when I get results back.

Mindy

[kippy6]

I was wondering if the cafe au lait birthmarks can be a sign of other illnesses. I have a good friend whose 3-year old child has cafe au lait birthmarks on his hand, leg, and foot. He also is extremely speech delayed.

[jerseygirl]

Kippy6,

More than 6 large cafe au lait (not birthmarks, not chloasma of preganacy, not sun related) are considered the signs of NF1, not NF2. This is an entirely different condition with different genetics and presentation. Both NF1 and NF2 can present with CNS tumors, including AN but NF2 is bilateral AN, rarer than NF1 and generally there is more morbidity and mortality associated with it.

NF1 can be associated with speech delay and certain, very specific learning disabilities which, when I checked last, can be treated with medication that, believe it or not, lowers your cholesterol. I am not talking here the psychiatric stuff. The treatment of NF1 is much more advanced than NF2; there is a lot more known and there is a mouse model of NF1. Unfortunately, there are still pediatricians out there who don't know anything about NF1 or NF2. If this were my child, I would take him/her to a NEUROFIBROMATOSIS CLINIC in a large teaching hospital because they can diagnose, treat and follow the disease properly. If it is not neurofibramotosis but is something else, genetic testing as well these peoples' expertise can show that.

Hope everything works out for you and your friend.

               Eve