AN's

[Mark H]

Howdy,
I've been reading here for a while now but seldom saying anything. My last couple MRI's have shown what they had been calling possible bilateral An's, but without a definite diagnosis I didn't really feel like I should be talking a lot. Yesterday I found out that I now have a definite diagnosis of bilateral AN's. I'm not sure what changed, maybe the Dr. I had been seeing just wasn't reading reports right. He quit and moved last month and yesterday I saw a different Dr. Anyway, as of last Feb.'s MRI they were both around 2mm in size, thankfully real tiny ones. I'll be getting another MRI long about Jan. or Feb. to see if anything has changed. Now that I have a definite diagnisis I feel a lot better. For a long time I've had the feeling the doctors thought it was all in my head. I was diagnosed with NF1 a long time ago but for several years I've been wondering about NF2 since I've had a lot of the symptoms for quite a while. I'm actually sorta glad in a way that the AN's finally showed up. And as small as they are at my age (53) maybe they will decide to stay small for a while.   
Mark

[Boppie]

Mark, I am curious.  May I ask...How were you diagnosed as NF1?  And you state, "I was diagnosed with NF1 a long time ago but for several years I've been wondering about NF2 since I've had a lot of the symptoms for quite a while".  With very small AN's what symptoms are you speaking about.

I'd have thought NF2 would have shown up earlier in some other tumor manifestation.

[Mark H]

Hi Boppie,
with the NF1, I've got the lische nodules in the eyes, cafe spots, and neurofibromas (lots of them) both on the surface and down on the nerves inside. As far as the NF2, from what I've read it usually shows up earlier but it isn't unheard of not to be diagnosed until later in life. Seems like all my medical stuff is always just a bit out of the norm.  I've had the balance problems, tinnitus and dizziness for some time. I had a cataract removed while I was in my 40's, which is pretty young for that. (another possible sign) MRI's always came up empty (insert joke here) until a couple years ago, when they said there might be something real tiny there. After the last one in Feb. my Dr. said they might be An's, (he quit and moved away last month) but the Dr. I saw yesterday told me that the diagnosis is definitely bilateral acoustic neuromas. I asked him if he was sure it was definite as I'd been told it was a maybe, and he said they are AN's. That's about as much as I know about it for now. I'll wait and see what the next MRI shows.
Mark

[Boppie]

Well Mark, You are a young person (I think so!) and have so much joy to look forward to.  Getting older has its rewards.  You will get to mentor and give up some of the vanities of youth.  At least that is how it is for me.  My thoughts are with you and that tiny AN.

Did you see the post by Tony referring to a study of aspirin in the control of tumors? 

Every day is ever more precious.  Keep on keeping on.

[Gennysmom]

Good to know ya Mark, sorry to hear about the NF2.  I will think lots of good thoughts for you on keeping them small and not to pesky.  I hope you are doing OK really, that's a pretty heavy load you're carrying.  Hang in there, we're all here for ya!!!!

[Mark H]

Hi Gennysmom,
I've suspected the NF2 for some time so it's no surprise. I'm used to waiting to see what NF will send my way so this is no big deal to me. The AN's are so tiny I should have a long time to decide what to do. I've never spent any time worrying about NF1, and I can't see any reason to start now. And being the twisted sort I am, I've always kinda liked the unknown.   
Mark