newly diagnosed

[catherineversland]

Hello.. My name is Catherine Versland . I was newly diagnosed about the 15th of September. I am 42 years old. I went to Dr. Samuel Selesnick In NYC.. and he has instructed me to WATCH AND WAIT... I find myself still in shock but not upset.. MAKE SENSE? lol.. Afterall,  It could have been much worse. My AN is in my right ear...3mmX 3mmX2mm I have dizziness but am not quite sure if that the AN is causing it.I have perfect hearing in both ears but was advised by the doctor that I will eventually lose that. I also have headaches and head pressure but NOT constant. I think the WORST part is the DIZZINESS.. I am the kind of person that is very active and it has made it hard to get to the gym everyday.

[Jim Scott]

Hi, Catherine ~

Although I'm sorry you've been diagnosed with an acoustic neuroma I'm glad you discovered the ANA website and decided to register and post on the forum.  I think you'll be glad you did as our members are friendly, helpful folks.  Your AN is very small and observation (via MRI scans), called 'watch-and-wait' is a common approach in these cases.  The dizziness is, unfortunately, much a part of having a growing acoustic neuroma, which, though benign (not cancerous) is still in a problematical location that can cause problems, even when the tumor is quite small.  I hasten to clarify what your doctor stated regarding losing your hearing.  That could happen (it did to me) but only in the affected ear.  You would not be totally deaf. 

We're all AN patients here and understand what you're going through so please feel free to ask any question and know that we'll support you in whatever path you choose as you deal with your AN.

Jim 

[CHD63]

Hi Catherine and welcome to this forum .....

Yes, dizziness can be very disconcerting and you should be watchful whenever you are walking.  It is possible that doing some vestibular exercises might help your brain to know what to do with the mixed signals it is getting from the vestibular nerve on which the tumor is growing.  There are many good ones on the Internet, or I would be happy to send some to you that I used, if you send me a private message.  if or when you need treatment, the exercises will help you adjust to a missing vestibular nerve.

Also, if you have not done so already, you might want to send for the free ANA materials:  http://www.anausa.org/index.php/contact-us/free-ana-information-packet  You will find good information in the packet that is non-threatening and very helpful as you look ahead.

Even small ANs sometimes need treatment if the symptoms alter your life to the point you cannot enjoy your normal activities.  Be sure to contact Dr. Selesnick again before it reaches that point.  Many people on this forum have been watching and waiting for a long time with very few symptoms.

Many thoughts and prayers.

Clarice

[TJ]

Catherine

I will just share this small piece of information.  We have a gentlemen in our local support group that has been in W&W for over twenty years will little to slow him down.  So there are cases out there.  As the others have said just make sure you keep a watch on it.  You can get all the information you can find and if it does grow you will be armed with information you may need to make a decision.

Good Luck
TJ

[Tumbleweed]

Hi, Catherine:

There is no reason why you should lose all hearing in your ear on the side with the AN (and certainly not in the other ear). With such a small tumor (barely the size that an MRI can detect) and still-perfect hearing, you can probably save most or all of your hearing by getting radiotherapy such as CyberKnife (CK) to treat the tumor before it degrades the hearing nerve.

However, it's not as straight-forward as that. CK (as well as microsurgery and other forms of radiotherapy) can also damage the hearing nerve. So, you have to weigh the risk of hearing loss from the AN vs from the treatment for the AN. With your tumor being so very small and your hearing perfectly preserved so far, watchful waiting is a very reasonable course to take at this time. Should you begin to notice hearing loss or tinnitus (a ringing sound in the ear), however, you should consult with doctors who do microsurgery, CK, GammaKnife and other forms of radiotherapy (standard FSR, or fractionated stereotactic radiotherapy) to figure out which treatment protocol is most likely to preserve your remaining hearing.

My opinion is informed from a conversation I had with Dr. Steven Chang, esteemed doctor of CK and microsurgery at Stanford University Medical Center in California and one of the world's leading authority's and practitioners on treating ANs. He told me when I was in watch-and-wait that the sooner I had CK, the better the chance of preserving my remaining hearing. Please keep in mind that my AN was way bigger than yours and growing much faster than the norm. So watch-and-wait was not a good option for me; I needed treatment and soon. And, too, I had already lost a significant amount of hearing on my AN side, so treatment to stop the ravages of my tumor was more pressing.

Your situation is different. You should be in no rush to seek treatment, although researching your future treatment options now while you can bide your time will be way less stressful than waiting until it becomes a more pressing matter (if that time ever arrives; some ANs don't grow for 20 years, so you may never need treatment). The point I'm trying to make is that you should not assume it is a done deal that you will lose your hearing over time on the AN side. Do not fear; this is not a foregone conclusion. It is the opinion of only one doctor. There are certainly others who will give you a rosier prognosis.

Best wishes,
TW

[leapyrtwins]

Hi, Catherine.  Welcome to the Forum 

Like most here, I'm not a doctor so I won't second guess Dr. Selesnick.  He's the professional and he has an excellent reputation.

Your AN is small - some might say "tiny" - and from what you're telling us it sounds like W&W is your best option.  Keep in mind that most ANs grow very slowly.

If you experience more symptoms,  (e.g., you start to lose your hearing), or your existing symptoms get worse (dizziness becomes debilitating) it would probably be best to consider treatment, but I'd let Dr. Selesnick make that call.

You're in very good hands. 

Jan