Watch and Wait

[frank]

Hello all:
I am a new member having been diagnosed with a right sided 8 mm x 5 mm x 6 mm intracanalicular AN in April 2007. I am 70 years old. I have the usual tinnitus and fullness feeling in my right ear. I am due for a follow up MRI in late April 2008 to determine if my AN has grown.
Assuming that my results will show that it has grown, I have been investigating my options. Gamma Knife or CyberKnife looks most acceptable for me.
My question is this. I live in upstate NY (Utica). How do I find a Center of Excellence in GN or CK that is reasonably close to my area? I have heard about Pittsburgh, Boston and NY City. Does anyone know of any others?
Thanks for the help.
Frank

[ppearl214]

Hi Frank and welcome.  Sorry you join our ranks but thrilled you found us!

Many of us have had many forms of AN radio treatments. I was treated in Boston at Beth Israel 2 yrs ago.  If you read the "radiation/radiosurgery" forum here.. and also check the CK Patient Support website (http://www.cyberknifesupport.org/forum/), you will learn much about CK and GK treatments for AN's.  the info can be very overwhelming, so please remember to take a step back every now and then to take a deep breath.... but know we are here for you.  Your AN is still small and you have time......Please keep us posted on your updated MRI in April... that will be key to see if anything further is occuring.

Again, welcome.
Phyl

[agnes]

Hi Frank-I am rather new at this myself and was diagnosed last year with Accoustic Neuroma about the same size as yours on the left.  I am in the watch and wait
status which the physicians thought best for me.  I was searching the internet and I did find a Central New York Gamma Knife Center in Syracuse New York.  I don't
have a New York map in front of me, so I am unsure how close you would be to that area. It states at the web site that they have treated over 1,700 patients
since opening in August of 1998.  You can also request information from the Acoustic Neuroma Association which is listed within this forum in GA and they may be
able to help you. http://www.upstate.edu/uh/gamma/. This is the web site if you would be interested in checking it out. Search the internet and maybe someone
will come back and reply that has gone to one of these places in New York State. Wishing you the best. I just had my second MRI and it is unchanged from last
year.  I have left sided hearing loss, and a little bit of vertigo, but no other symptoms. 
Agnes   

[ErinLeigh]

Hello, I was just diagnosed last week with what I think is AN, although my Dr. just referred to it as a schwannoma??? I had been having right sided facial numbness for about a month and finally I got an MRI on Easter Sunday and it showed a 1mm growth. I understand that this is really tiny so I am confused as to why I am already having symptoms. I do feel blessed that we seem to have caught it early, but I am so overwhelmed.

I am 31 and my husband and I were planning to start our family this year. I feel like my life is on hold right now and I am so scared.

I am being referred to a neurosurgeon here in Phoenix so hopefully I will get in soon. Although when I called for the referral the admin asked if it was a life or death situation. Tactful...

I would appreciate any advice. Since I found out about this last week these message boards have been so comforting.

[leapyrtwins]

Erin -

schwannoma is another term for neuroma.  You may hear other terms like facial nerve schwannoma, acoustic schwannoma, cochlear schwannoma, vestibular schwannoma, and acoustic neuroma (AN).  Boy, that was a mouthful 

Although yours is very tiny, symptoms aren't always related to size; sounds very strange I know.  Some people with large ANs have few symptoms, some people with small ANs have many symptoms.  Go figure!

There are others on this forum who live in Arizona, a few newbies like you come to mind - MaryBKAriz and AJ.  And I know that Cheeka recently had a baby.  If you search under their names, you can find their posts. 

I'm glad you found this forum and find it comforting. 

Best of luck,

Jan

[sgerrard]

Hi Erin,

I'm wondering if that was 1 cm, not 1 mm? I find hard to imagine spotting a 1 mm tumor on an MRI. Even at 1 cm (= 10 mm), it would still be in the small category. Every now and then someone gets a whopper, maybe 5 cm in size, or about 2 inches, which can be life-threatening, so I guess they have to ask. Not to worry.

There are several on this forum who have had an AN treated, and gone on to have one or more children, so no problem there, other than waiting a while until you can get this sorted out.

- - - - - -

Hi Frank,

I'm just going say welcome aboard, and from what I understand, one of the few benefits of being older, rather than younger, is that ANs tend to grow more slowly, or not at all. So you may luck out and have one that is not going anywhere or doing anything, and can be left alone. Got to look on the bright side, you know...

Best to all,

Steve

[ErinLeigh]

Steve and Jan,

Thanks so much for responding so quickly. My doctor actually said that it was less than 1mm and than it is too small to even consider doing any type of surgery on... Which I guess is good, but all I can think about is that I want this thing out of my head:)

Being that it is so small do you think it might be something else? I am going to get a 2nd opionion in the next two weeks and I will let you know what I found out.

I am also planning to send my MRI results to the House clinic in LA, which is only 4 hours from me. I do feel blessed that we seem to have caught it early, and that I am close to good doctors.

Again, your advice is so appreciated!

[Kaybo]

Hi Erin~

They found my tumor right when we were going to start our family also.  I had AN surgery in Dec. of '95, reconstructive nerve graft in Jan '97, and my 1st child in Nov of '97!!  Probably a little quick -- I had a LOT of problems (not w/ the pregnancy --  I had a HUGE tumor) so I wouldn't reccomend that soon -- but if I could do it over again, I probably wouldn't change it.  I now have 3 daughters! Please contact me if you like to chat!  Check out my life after an AN at the blog below!
K

[frank]

Hi Phyl, Agnes and Steve
Thanks for the response and the info.
Agnes - You seem to be in the same situation as myself. I did look up the Central NY Gama Knife Center reference you found for me . It is located only 50 miles from home. I will be investigating this further if my next MRI shows any significant growth.
Again, thanks to all for your responses and support.
Frank