Very Small Tumor in DC-Area

[Ellen K]

Hi Everyone - I have a very small and fabulously round AN (2mm x 2mm x 2mm) on the right side, diagnosed in December 2010.  I wrote about this in January, and for some reason my log-in information was deleted.  I've figured out the glitch and am back on, so if my story seems familiar, that is why.

I went to my local ANAUSA support group meeting last month, which was quite useful.  I am on watch and wait with another MRI scheduled for sometime in the spring or early summer.  I sent my films to the House Ear Clinic for a free consultation.  The doctor gave me good information in order to better understand where the tumor is (quite close to the cochlea and entirely in the inner ear canal) but was quite focused on surgery, which I'm not at all leaning toward.

As the last gentleman just posted, I also get almost daily headaches - kind of like a brain freeze when you eat ice cream.  I searched past posts on the forum and found that most doctors do not associate ANs with headaches, but that there were several people in the past who have complained of headaches that worsened with other AN symptoms.  Of course, it could be stress related, but any thoughts would be welcome.  My symptoms started in spring 2009 with very severe vertigo that lasted about a day but kept me out of commission for several days.  The vertigo attacks subsided and turned into almost daily dizziness (blech).  I have no hearing loss and infrequent tinnitus, which just started.

One thing that I have found helpful is to follow the Meniere's diet of low salt, sugar, eliminating caffeine and alcohol.  I'm also very focused on eating well and keeping my weight down. 
My question - which I'm having trouble typing as the system is jumping up and down (!) is again on the headaches, and to solicit any input from those who have gone to Pittsburgh for Gamma Knife.  I am honing in on that as my strategy, but would welcome any thoughts.  I play music and would like to hold on to as much hearing as possible.
Thanks to this wonderful community - Ellen

[CHD63]

Hi Ellen and welcome (again!) to this forum ..... (I suspect your original log-in info was lost during the site overhaul/blackout period.)

It sounds like you are doing all the right things with attending a support group meeting, sending your MRI to HEI, doing lots of research, etc.  Good for you!

The brain freeze headaches sound like a neuralgic type pain (remember, I am not a doctor!), which could be related to the AN or not.  Be sure your doctor is aware of them, however.

Good plan to follow the Meniere's diet ..... it actually would be good for all of us.

I did not have radio-surgery, but several on the forum have gone to Pittsburgh for gamma knife ..... also Wake Forest Medical Center in NC has an excellent gamma knife center.

I, as well, have spent my life as a musician and keeping my hearing was a big deal for me.  Although I had surgery I have retained 20% of my hearing, which is boosted nicely with a WidexMind digital hearing aid.

Let us know how you are doing.

Clarice

[Jim Scott]

Hi, Ellen - and welcome.  Thanks for your kind words.

As you know, ANs can manifest some very troubling symptoms as they grow (which they usually do) and your headaches are fairly typical, as are bouts of vertigo, among other unpleasant things.  That you have little hearing loss and are a musician is important because it indicates that you should likely consider treatment sooner rather than later if your next MRI shows tumor growth and/or your symptoms increase or intensify.  The choice of surgery or irradiation is always crucial - and difficult.  There are the inevitable pros and cons for each approach.  Many of our members, including some of the other moderators, have undergone successful radiation treatments.  I had both surgery and radiation (in a planned sequence)  and did well with both (no complications).   Unfortunately, I live in Connecticut and cannot offer any information on the Gamma Knife facilities/doctors in Pittsburgh, PA.  However, I'm sure other members will be posting more useful information on the questions you've posed.  In the meantime, I wish you much success with whatever form of treatment you ultimately chose. 

Jim

[rupert]

   Hello Ellen,

            I am a post toastie,   done at the University of Pittsburgh gamma knife center.    Your AN  looks like it is small enough for all options.
I see that you sent your disk to House for an opinion,   you can also do this at UPMC.   Just send your disk to the Dept of neuro/ gamma knife and
they will give you their opinion.    You can call the department at  (412) 647-7744   and get all of the information .   They also have a website.  Just look up
UPMC  Dept of neurosurgery/ image guided/ gamma knife.     I had my GK  done there a little over a year ago and was very pleased with the level of service and the procedure.   If  you have specific questions about the procedure or anything else about my UPMC experience,  I would be more than happy to answer your questions.

                                                                                                                                                                            Bryan

[mattsmum]

hi - i remain convinced that my AN has given me headasches both before, and since radiation.
i have had migraine since my teens, but in the months before my AN was diagnosed was having different headaches. i was often woken in the morning with a headache (but not a migraine) that would often improve during the day and would joke with my husband about having a brain tumour!
i finally went to the doctor when i added up the headache, balance probs, unilateral tinnitus, fluctuating hearing loss and facial numbness on that side and got acoustic neuroma (me and hubby are both doctors) and was unfortunately right. however i was also told that the headache may have got me to a doctor, but it was not caused by the tumour.
since treatment i have had more headache, a lot more one-sided pain on the AN side and trigeminal neuralgia with tumour swelling (amongst other symptoms). the docs who treat me accept this is caused by the tumour - and i feel it is the same headache, although worse, that i had before treatment.
balance problems can cause visual and focusing trouble so don't be too quick to pit it down to stress. an unhappy vestibular nerve can cause a lot of trouble.
best wishes with your progress,

vikki

[jaylogs]

Hi Ellen!! I just wanted to add my welcome to everyone else's! This place is great for lots of support and insight into each person's experiences, as I am no doubt sure you have noticed!  I am always amazed at the varying degrees of symptoms each person experiences before they go in and get that ultimagte diagnosis.  I never did have the headaches like you and that other gentleman have, mine was more of the hearing loss and balance thing.  It sounds like yours is small enough now that you have lots of options to weigh before you eventually make your decidsion.  Let us know if you have any more questions about anything, or if you just need to vent (we are good at those too!) Take care and good luck!
Jay

[moe]

Hi Ellen,
Another belated welcome. I seem to be following Jay's posts! hi there Jay
 Curious why the HEI docs recommended surgery with the small size AN
Will be interesting to see what the other opinions reveal.
We are here for you, all the emotions and questions. The support is great.
Keep posting!
Maureen

[Mickey]

Hi Ellen! Seeing that your AN is just about noticable, I agree with what your doing taking your time doing your homework and staying healthy. Not much more I can say but that your on the right track and that everything should come to you in time and all will be fine. Best wishes, Mickey

[Ellen K]

Hi Again - this is Ellen.  A big THANK YOU to everyone who responded.  I feel wiser and warmer for the welcomes and information.  The headaches have somewhat subsided (at least for now) and the dizziness is back.  I feel a bit like Alice in Wonderland - once I think I know what I'm dealing with, it turns into a flamingo. 
All the best, Ellen