symptoms

[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

[leapyrtwins]

It seems to me location of AN`s play a big role of what symptoms one gets.
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.

Mickey is absolutely right.

When it comes to ANs, we always like to say that one size does NOT fit all.  Same goes for AN treatment. 

Jan

[jerseyboy]

Thank all of you for your interesting and helpful posts.  Gosh, this is a terrific board.  The ANA team gets major kudos for organizing this.  Well, I've made a decision.  After spending a massive amount of time thinking about and researching treatment, and leaning toward the CiberKnife, I decided that my symptoms are unusual enough to warrant a very thorough diagnosis - i.e., sort of a holistic approach to see what else if anything might be going on aside from my AN.  So, I've made plans to have my medical records sent to the Mayo Clinic in Rochester, MN.  (I met Dr. Link at the recent ANA Chicago symposium.)  Once they review my records they'll call me to schedule an appointment to come out for more tests.  I want to be sure all the dots are connected before any treatment is decided upon.  Parenthetically, one of the themes of the Chicago symposium was to focus more on your doctor selection than the treatment selection, at least initially.  Thanks to this board for helping me gather my thoughts.
Jeff

[LisaP]

Hi Jeff,

thanks for responding to my posting,  I have headaches daily, so when the doctor disagrees with the symptoms that I am having and states that they are not related to my AN, I guess I will quietly disagree with him due to having done my own homework like talking to eveyone on this forum.   Also we are all different and so are our symptoms.

LisaP

[TJ]

Jeff

Yes I have the same feeling in my head almost feels like I have a cold but I don't.  I also have tinnitus to go a long with it.  The one thing that has really helped my fullness in my head is a supplement that my doctor recommend that I take.  I am not a sales person for this but it really has helped in my case.  It is called Lipo-Flavonoid Plus.  I have taken it for about 6 months and most of the fullness is gone.  Good Luck

TJ

[jerseyboy]

TJ,
I saw Lipo-Flavonoid Plus advertised on TV about a month ago and thought I'd give it a try.  Versus the recommended two caplets three times a day, I've been taking one caplet once a day, figuring it likely wouldn't work but one caplet couldn't hurt me.  With my symptoms of frequent weird rolling headaches and dizziness I'd try anything!  To my pleasant surprise my symptoms have lessened considerably in the last week.  I attribute that to the astonishing variability of my symptoms, which can change by the minute, than to the success of the pills.  But, since I might be wrong, I'll keep taking them.  Who knows!
Jeff

[Mickey]

Hi Jeff! Yes, the supplements do work! Iv`e been pickin and chosin my own with everything included in the lipofavinoid package. My MRI has been stable for 2 years now and I feel pretty good. Best wishes, Mickey