New to this forum

[hendi51]

My husband has been diagnosed with a AN. It is small in size, 7x5mm, but is causing some problems. He lost his hearing first, then has had dizziness since December, 2006. His dizziness isn't spinning, everything seems to be moving up and down. Sometimes the bouncing is very bad. He also complains that his head is floating and he has tinnitus though it isn't bad most of the time. His balance has been affected as he staggers like he's been drinking. He also complains that sometimes his feet don't want to move and has fallen 4 times. Luckily he hasn't injured himself other than bumps and bruises. We get another MRI Wednesday and see the ENT August 10.

[Omaschwannoma]

Hi,

Sorry to hear of your husbands difficulties.  This forum is great for supporting one another through difficult times and discovering an AN and how to treat it is overwhelming.  The symptoms you describe sound very familiar and probably are coming from the balance/vestibular nerve being compromised (pressed on) by the tumor.  I am 2.5 years out of surgery and getting on with my life teaching yoga.  Getting an MRI with contrast is the only way to diagnose an AN and having another one is even better.  Take a tape recorder to your doctor appointments so you can replay later if more questions arise.  There will be many wonderful people jumping in here to talk about how to treat (three choices:  1. Watch and Wait, 2.  Surgery and 3. Radiation Treatment).  Looking into each one, talking to people who have had their treatment, and finally talking to other doctors for 2nd opinoins or sometimes even third opinoins is the best approach. 

I recommend you send away for the AN Packet filled with lots of good information and the tapes/cd's of the most recent AN Symposium held this July in Philly.  Once you've visited with your ENT you'll be back here asking more questions as you gain more knowledge and understanding.  Hope to "read" from you again. 

[Dana]

Hang in there!  You've found a WONDEFUL refuge full of supportive, sympathetic, clear-thinking folks.  There's lots to learn as one makes a decision about how to proceed, and this forum and organization is a good place to reference as you sort out all the factors specific to your husband's situation.   

One of the many truths about ANs is that there doesn't seem to be alot of correlation between size of tumor and symptoms.  So, even though your husband's is small, it's having profound effects on his balance.  Perhaps it's the location of the tumor in relation to the balance nerve?  These are the kinds of facts that you and doctors have to determine as part of diagnosis so that you can decide best action plan.

As Arushi said, it's well worth joining this national organization --- an organization of patients -- and getting all the brochures, etc available.  Call 'em on Monday.  Plus you might start doing searches in this forum for the area of the country where you live (although that doesn't necessarily constrain where you get treatment, of course) so that you have some basic knowledge about teams of acoustic neuroma experts who you can go see after your ENT appointment.

Take good care.
Dana

[hendi51]

Thanks Karen & Dana. He was told on May 14, about the tumor. It's on the left side. Finally we knew what was wrong. We were originally told we had 2 weeks to decide if he wanted surgery or GK. When we went back to doctor the Neurosurgeon said "wait a minute!" Lynn had a heart attack at age 55 on January 21, 2006, then stents Dec., 2006 and Feb. 2007. They don't like to do surgery on any one that has had a heart procedure for at least 6 months. He has been cleared now if the surgeon is ready but will have to be put in the hospital one week before surgery to be put on IV blood thinner. They are afraid to take him of the Plavix cold turkey. We had wondered if that would be safe. Now we know, it wouldn't. This has been a very stressful time for both of us.

Freda

[Jim Scott]

hendi51:

Hi, and welcome to the forum. 

Dana is totally correct in that the size of the AN tumor and loss of balance (disequilibrium) are not necessarily related.  It's the location of the tumor that causes most of the problems.  My AN was relatively huge but I didn't develop symptoms, aside from the typical one-sided hearing loss, until 6 months prior to my diagnosis.  Until then, I was fine (I thought).  In fact, the 4.5 cm tumor had pushed my brain to one side and was beginning to compress my brainstem.  My primary care doctor was alarmed when he looked at my MRI (he called from his home, in the evening, which is very rare) and the neurosurgeon who I chose to perform the surgery was equally concerned.   So, in my experience, having severe symptoms does not automatically equate to having a large tumor.

Your husband may well be a candidate for non-invasive radiation treatment.  You will both need to learn as much as you can - this website is a fount of AN information - and make an informed treatment choices.  Don't rush into anything but don't waste time, either.  These AN tumors can grow very slowly or very quickly, in 'spurts' - and bigger is definitely not better! 

We're here to support and help you and your husband in any way possible.  Please stay connected. 

Jim

[ppearl214]

Hi Freda and welcome.  It is good to see you and your husband here as we are here to support as best as we can.....

I am a little surprised that the dr's said that you have 2 weeks to decide as that is (IMO) not a good call.  The size of the tumor is deemed as "small" by AN standards and may not grow at all. Jim makes a good point in noting the location and the affects the AN may have based on it's location......My AN was the same size as your husbands and I had time to make my well informed decision.  Please do not let the dr's give you "scare tactics" as many out there do.  I was monitored for 8 mos before my decision process was made.  I had my baseline MRI (with contrast) done... then another one repeated in 6 months to see if it had grown... some don't grow fast, some do.    For me, mine was growing steadily and had to make my decision... there are many that participate on this board that have been "watch/wait" for months/years.. and it gives them time to truly research treatment options during the watch/wait period so they can make the best, well-informed decision that they can. The treatment decision is highly personal and many here are happy to share their experiences with how they handled their diagnosis, decision making and post-treatment journey.

Please hang in there.... please do what you feel is right for you all... please read and ask questions..... and regardless of what you all do... know that we are here with shoulders, good ears and an occassional bad joke to help the cause.

Again, welcome
Phyl

[Obita]

Hi Freda:

Welcome!

I am so sorry that you had to join us but I am glad for you both that you know what is causing his symptoms. 

Good luck on the 10th.  Maybe his ENT will be able to give him something to lessen the symptoms while you
research your options. 

Kathy

[Betsy]

Welcome Freda,

It's good that you and your husband didn't rush to treat his AN, especially considering his recent medical history.  Giving you two weeks to decide?!  That's nowhere near enough time to make a decision.  I changed my mind at least three times in the first couple weeks after diagnosis!  One of the most important things I've learned from this forum is that it's critical to understand your options before taking action.

This is a stressful and emotional time for both of you.  How lucky your husband is to have a wife who is involved in his treatment!  Please post again and let us know how you're doing.

Betsy

[matti]

Hi Freda and welcome to the forum. As others have stated, you have come to the right place, we will help guide you through this very confusing journey. Just remember AN's are treatable and benign.

You have both been through so much already, life just isn't fair sometimes.  Keep you  both in my thoughts and prayers.

hugs,
Cheryl

[leapyrtwins]

Hi, Freda -

as others have suggested, you might want to contact the ANA for an information packet.  I found their literature to be very helpful and easy to understand.  It will answer a lot of your questions about treatment options and also about AN's in general.  This forum is also a valuable source of information; you've come to the right place 

Welcome,

Jan
 

[hendi51]

I know the two week period sounds like it's way too soon and did turn out to be but you should see how Lynn's symptoms affect him. They are very unpleasant for him. Right now he's sitting in the recliner keeping his eyes shut so everything don't bounce around. Also he is having a lot of fatigue. We have researched every since his AN was diagnosed and he has decided that since the doctor has decided his heart is strong enough he wants the surgery so maybe he can get over the symptoms faster. He thinks the Gamma Knife would take too long to relieve the symptoms. I can only discuss his options and support him on whatever he decides. Please know that we truly appreciated all your comments and advice.