Newbie with questions about size

[Spyder Girl]

I am in the Army National Guard and we have annual hearing tests.  They noticed a loss of hearing at very high range in my right ear and sent me to an audiologist.  From there I was referred to an ENT who sent me for an MRI.  I figured I had hearing loss from living next to 5 massive generators for a year on deployment in Iraq.  I was stunned when I called for my MRI results (expecting nothing) to be told that I have what they believe to be an acoustic neuroma! I found out on April 9th (my husband's birthday)!

Not knowing what that was, I googled it and found this fantastic website!  I have been reading the information and the forums and everything has been a great help.  The ENT referred me to a doctor that is not on this website and who couldn't see me for 3 weeks.  Because of this great website, I called Dr. Roland's office at NYU (I live in CT) and was able to get an appointment for next Tuesday, April 17th.  I should add that I am supposed to deploy again in June, so I really need to get some answers fast!

Now that I have rambled on about my backround I will ask my question.  The radiologist's report said the mass is approximately 5mm.  Is that considered small?  I know I will get answers at my doctor's appt on Tuesday, but I figured I would ask here and find out sooner.

Also, I read in a couple of places about emailing the MRI to a Dr. Chang for his opinion.  Can anyone help me with that?

Thank all of you for being here for me at a very scary time.  I have never participated in a forum before and I think it will really make a difference for me and my husband to have real people giving us real answers!

[Archer]

First of all, Spyder Girl, THANK YOU for your service!  We appreciate it very much.

Welcome to the forum.  I am sorry you needed to find it in the first place but glad you did in any case. I won't be able to tell you how to get in touch with Dr. Chang but I might suggest you get a consult with someone at the House Ear Clinic as well.  They will give you an expert opinion on this from a surgery point of view as Dr. Chang will look at it from the radiation treatment point of view.  I do believe both will be objective in their opinions, not unduly biased for their form of treatment.  Here is the link to the AN Consult site for House Clinic.
 
http://www.houseearclinic.com/consultation/acousticneuroma 

I'll suggest you get many opinions on this as you decide what you need to do.  It all helps a great deal in feeling confident in your final decision.  Good luck and God Bless! 

Rich

[Jim Scott]

Hi, Sue ~

5mm is considered quite small.  Just for comparison, my AN was large at 4.5 cm, which would equal 45mm (and I had a very good surgical & radiation outcome). 

Dr. Steven Chang practices out of the Stanford hospital clinic.  He has a sterling reputation.

Here's a link to the Stanford website which offers Dr. Chang's phone & fax numbers as well as his e-mail address.  He is famous for prompt replies to questions from AN patients.  http://cancer.stanford.edu/profiles/cancer/frdActionServlet?choiceId=facProfile&fid=4735&suffix=physician.

I hope this helps!

Jim

[Spyder Girl]

Rich and Jim, thank you so much! I have just gotten an appointment with Dr Golfinos for next Thursday so I think I am off to a lucky start! Jim, thanks for the encouraging news that 5 mm is considered small. Hopefully the radiologists report is accurate!  I will definitely be getting in touch with House also.  I think my next post will be positive!

[jaylogs]

Hello Spyder! Love that name by the way!   Yes, as Jim mentioned, yours is quite small...which, unless the doctors find something otherwise, will possibly give you some breathing room and a choice of options....surgery, radiation or simply watch and wait (W&W).  Just know this thing in your head is not the end of the world...just be glad you got it in this day and age where they can take good care of it thanks to all the technology available! If you have ANY questions/concerns or just want to vent, that's what this forum is for. We are not doctors and every person is unique, so just bear that in mind as  you seek treatment options! Good luck and we are looking forward to hearing from you with any updates!
Jay

[pjb]

Rich and Jim, thank you so much! I have just gotten an appointment with Dr Golfinos for next Thursday so I think I am off to a lucky start! Jim, thanks for the encouraging news that 5 mm is considered small. Hopefully the radiologists report is accurate!  I will definitely be getting in touch with House also.  I think my next post will be positive!

Good luck with your appointment next week I am sure it is going to be positive I cannot wait to hear what you think I will be going to him in the beginning of May...Good Luck

Best Wishes,

[leapyrtwins]

Welcome, Spyder Girl.

As others have said, your AN is small.

Dr. Golfinos has an excellent reputation.  Good luck with your appointment.

Jan

[It is what it is]

Hi to all,   

The question about size has also been on my mind and it was interesting that you, Spyder Girl, have the same size AN. 

I received my diagnosis from an MRI report (5mm acoustic schwannoma in left internal auditory canal) 10 days ago.  Since then I have been researching this as much as possible in between work and family time.  It took me awhile to understand that this tumor goes by different names.  Since I connected the dots and found this site, I have realized what an incredible treasure it is and you are.  I feel incredibly fortunate to have found you!  Thank you all for the wisdom and experience you have been willing to provide in your postings.  Also a huge thank you to those who responded to my questions on the "willing to talk" list before I figured out how to access this forum.   

The ENT doctor who ordered the MRI left the country for a few weeks immediately afterwards and my oncologist has also been out of town and has yet to return my call.  (I was treated for breast cancer in 2011.)  So, you all have been my only "talking" resource so far.  Thank you thank you thank you!!!!!!  There are not adequate enough words to express the comfort and reassurance I have felt knowing you all are there and have traveled this road before me. 

If I understand what is being shared, this tumor is quite small and may allow for all three options to be a possibility at this point--wait, surgery or radiation.  Also, I think I understand my next step would be to send out the MRI to several places for feedback from the experts.  When they respond and provide consultation, then I can make a decision about the next step after taking their recommendations into consideration. 

Please let me know if it sounds like I am missing some steps and/or if you have other pearls of wisdom to share.

How come many of you have a 3 dimensional sizing of your tumor?  My MRI only reported as one dimension. 

I hope your week is filled with good things,

karen     

[leapyrtwins]

Karen -

I'm sure my AN had 3 dimensions, but my neurotologist and neurosurgeon only referred to it in 1 dimension (1.5 cm then almost 3 cm).

If it were me, I wouldn't send my MRI out to several places; I'd schedule appointments to discuss my options with docs that I felt I'd like to treat my AN.

There's a lot to be said for a face-to-face conversation (vs a phone conversation) and personally I think it's vitally important to meet someone who may ultimately surgically remove your AN or radiate it.  People look for different things in doctors, and doctors have different personalities and bedside manners; oftentimes you can't get a handle on that unless you meet someone in person.

Just my two cents worth,

Jan

[arizonajack]

I'm sure my AN had 3 dimensions, but my neurotologist and neurosurgeon only referred to it in 1 dimension (1.5 cm then almost 3 cm).

My results were given to me in 3 dimensions: a horizontal cross section of 3 mm, a vertical cross section of 4mm, and the length along the nerve of 9mm.

However, based on the diagrams that I found in my research yours might be roughly spherical which might account for it being measured in 1 dimension. Just guessing there, though. You might want to ask your doctors if that's the case.

[It is what it is]

Thanks for your responses! 

Due to the time and expense of traveling to different states and areas of the country, phone consultations seem the best option for me.  Even though my tumor is small, I have symptoms that I don't want to worsen before I can get treated.  I also would like a cure if at all possible, so I'm strongly leaning toward surgery.  Feel free to share your thoughts about this so far.  I'm avidly reading your stories.  They are extremely helpful to me. 

Sharing your experiences is a priceless gift. 

THANK YOU!!!!!!!!!!!   

Karen F

[arizonajack]

I am also newly diagnosed and learning as much as I can.

What I have learned so far is that the damage to the vestibular nerve is not reversible even if the AN is surgically removed or arrested by radiation treatment.

All of the treatments have consequences.

No one can tell you what to do but I think that contemplating surgery is a bit premature until you've determined the growth rate of your AN.

I had my first MRI in May and will have another in October. Meantime I'm on Watch and Wait.

Here's something for you to consider, though. If you already have enough Active Duty to qualify for VA health benefits, I suggest you try to avoid another deployment. No sense in going into an environment that might exacerbate your condition.

[Bonnie B.]

I also live in Connecticut and had GK three months ago.   After going to a few neurosurgeons, otologists and radiation oncologists, I ended up at Yale New Haven Hospital.  I saw Dr. Veronica Chiang and Dr. Yu.   I did do lots of research prior to my decision.  I do not regret for one minute my decision to go to the Smilow Cancer Center at Yale New Haven.   Do you live far from there?

[JWW]

Is it necessary to have a MRI with contrast (gadolinium, an enhancing contrast material)?

Can an AN be identified with just a plain MRI?

JW

[leapyrtwins]

It's possible to see an AN with no gadolinium contrast, but it's also possible to miss it - especially if it's small.

Your best bet is to have the contrast, then there should be no doubt.

Jan