Watch and Wait > For those in the 'watch and wait' status

symptoms

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jerseyboy:
Most folks have symptoms of hearing loss or tinnitus.  I don't have that; instead I have a floating type of headache.  It's rarely severe, but nearly ever present.  It feels like a marble is rolling around in my head, always changing.  It's very disconcerning.  Has anyone else experienced this?  My MRI was in May 2009, where they found a 4mm AN.  My next MRI was supposed to be in November but I plan to call this week to get one sooner.
Jeff

Jim Scott:
Jeff ~

I didn't have the 'floating' headaches you're experiencing but if I've learned anything in the 3+ years I've been reading posts on these forums, it's that every AN patient has a slightly different experience.  There seems to be an almost unlimited amount of possible manifestations of an acoustic neuroma.  However, I have no doubt that there are people reading posts here (if not actually posting, themselves) that have had a similar experience, i.e. the 'floating headache' you describe.  They just haven't seen this thread, yet.

I have to agree with your decision to undergo another MRI scan sooner rather than later.  It may or may not show any growth - but you need to know that, one way or the other.  Of course, I hope it shows no growth and that your headaches subside, soon.

Jim

amye:
Hi Jeff;

I also have a small (4mm) AN and I also go through periods of having headaches exactly like you describe. For me, they seem to be related to my problems with vision/gaze stability caused by nystagmus (which you may also have - I only found out about mine by going to a vestibular therapist who did some testing and explained all this to me. It really helped me to make sense of all the weird little symptoms I keep having!).  As I understand it, the headaches with a small AN are usually a result of the brain struggling to compensate for the loss of vestibular function as the nerve is slowly destroyed by the tumor. In my case, the vestibular-ocular reflex has been disrupted/damaged, and thus my brain is struggling to keep my vision stable as I move about.  My eyes get fatigued after several hours, and I get vague headaches that sometimes last for a long time if I don't take something (like a couple of Ibuprofen, which usually does the trick). I know this is AN-related for me because I never ever got headaches before.

Hope this helps. Somtimes I think that those of us who find out about our small tumors early on have the "advantage" of experiencing all these processes with full knowledge of what is causing them, whereas those who discover their AN's later attributed their symptoms along the way to other causes, or just ignored them. 

Amy   

Mickey:
It seems to me location of AN`s play a big role of what symptoms one gets. There is so much going on in the small area where ANs show up that its a matter of mm`s to what part of whatever will be disturbed. There are big tumors who go practically unnoticed and some small tumors which create alot of symptoms. I guess every case is individual and should be monitored accordingly. Your AN is very small and I would do what you are doing now. My AN is 3 times larger (still considered small) but up to now has givin me nothing to much to act upon. (yearly mri `s  tiniitus). Best wishes, Mickey

suboo73:
Hi Jeff, 

Sorry to hear your are having these symptoms - sounds like your AN is small but mighty [as they say here on the Forum].

All my thoughts and prayers are with you as you search for your answers and for relief. 
Sounds like you need to go have that MRI and see what is going on.    ???

We are here for you.  Keep us posted.

Sincerely,
Sue

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