Newly diagnosed AN

[Marilyn55]

 Hi,

I recently found out that I have AN, diagnosed by MRI. The MRI states it is 7mm, I don't know how that equates in size .I've been referred to specialist at USF(Univ. of South Florida ) in Tampa Florida, I am waiting for an appointment to follow up with them. Has anyone been treated through USF or know anyone who has been seen by them? I presently have ringing in my Left ear and slight dizziness at times embalances. I am very anxious but have read many articles on this forum which has calmed me down a bit!  Any advice is welcomed.

Thanks
Marilyn55 

[Dana]

Marilyn,
Glad you found our forum - as you said, it's very nerve-wracking to be diagnosed with an AN.  This is a wonderful forum, both to calm nerves and provide information and companionship.  7 millimeters is very small, so I would think you'd have all treatment options open to you.  They generally break down under three major treatments:  "wait and watch," radiation treatment or microsurgery (physical surgery to remove it).  It's a choice you'll have to make based on lots of factors - size and location of tumor, symptoms you're having, what you feel comfortable with.

Radiation is either a one-shot deal (often GammaKnife) or a several-day deal (often CyberKnife).  But it's never the kind of ongoing radiation to the entire body that makes people lose their hair and be sick to their stomach.

Anyway, there's lots of learn and explore and I know other forum members will be chiming in soon, so ask any question or express any concern, and it will be addressed, as a group of folks who have ANs.

Dana

[wendysig]

Hi Marilyn,
I was not treated at USF but wanted to welcome you to this forum.  As you have seen for yourself, this is a wonderful place to come for comfort, advice, or just to vent.  Your tumor is very small but I am sure that doesn't change the amount of anxiety you are feeling.  The AN diagnosis is frightening no matter what size the tumor is.  The first thing you should do is contact the ANA and ask for literature -- I was given this advice by another member and found it very helpful.  Because your tumor is small you may be advised to "watch and wait" which means watching via future MRIs to see if the tumor grows -- there are other choices though, microsurgery (conventional surgery)  and stereotactic radiosurgery (this procedure is is a radiation treatment that disrupts DNA of the tumor and arrests its growth.  Hopefully,  the tumor will eventually die completely over time).   The choice each person makes is as individual as each person.  No treatment choice is right or wrong for anyone but you.  My tumor was 1.3 cm at the time of diagnosis and 2 cm at the time of my microsurgery.  I chose this method of treatment because it was right for me and I had a wonderful outcome.  Many here have chosen stereotactic radiosurgery and are equally happy with their choice.  The best advice I can give you is research acoustic neuromas, find a doctor you trust and ask as many questions as you feel you need answers to.  If someone doesn't want to answer all your questions, they are not for you.  If you would like answers to specific questions, you can PM me.

Best wishes,

Wendy

[Jeanlea]

Hi Marilyn,

Welcome to the group, but sorry you had to join.  Take a deep breath and try to relax.  You will find many people who will answer your questions here.  Your tumor would be considered small if I recall correctly.  You will have several options to choose from with that size.  You can "wait and watch", have radiation, or surgery.  Each form of treatment has its own pros and cons.  With your size you will be able to spend a lot of time doing research and finding out which option will work best for you.  I'm in the north so I am not familiar with USF but I'm sure there must be somebody on here who is.  

Jean

[Omaschwannoma]

Hi Marilyn55, welcome to the "club".  You were wondering about the size of your AN and at 7mm it fits into the small category which is good.  Most doctors will tell you about "watch and wait" at that size and also if your symptoms are only minimal waiting is a good course of treatment.  I know "Battyprincess" went to Tampa, but I cannot remember her doctors name, so just do a "search" on this site for Battyprincess and you will be able to talk to her.  Also, if you can get the information packet from ANA they will have a "willing to talk" list and perhaps there is a group of ANers that meet near you that you can attend.  I have heard good things from Tampa and her doctor, sorry can't remember his name!  Again, welcome and very sorry you have to meet us in this way.  I was treated at Shands at University of Florida and recommend Dr. Antonelli to talk with.  

[kimbo]

Hi Marilyn

Welcome and I'm sorry you have been diagnosed with AN.  I have only just joined the forum like you and diagnosed on the 8/8/08 with a 13mm x 9mm AN with hearing loss and tinnitus.  I saw the specialist (Australia) last week and fortunately I can wait and watch and have a follow up MRI in Feb 09, I have nicknamed it turtle hoping that it is so slow that I won't need consider treatment for a long time.  You have found the right place that will give you the comfort you need through the knowledge they have gained by sharing their stories and research with the forum.  More importantly somebody will always listen.

Good luck with your appointment and if you have questions after that I am sure the forum ; more experienced than me will have plently of advice.   

Kim

[Pooter]

Marilyn - Welcome to the forum.  I also wasn't treated at USF (in Houston instead) so I can't speak to that.  I will tell you that you should have several options available to you with it being that size.  That's generally considered "small".  To give you an idea, mine was 30mm.  Things are very close to "normal" after surgery in May.  I still have a little facial weakness but it's getting better every day it seems.  You will be okay with this type of tumor.  They are generally benign and slow growing.  That isn't much of a comfort right now, but trust me you'll be thankful for both of those things in time.  I'm glad that the forum stories have been helpful to you.  That is what we are all here for.  I wish you success in your journey.  If you have more questions of any of us, please let us know.  We'll all be here for you through it all.  Good luck!

Brian

[leapyrtwins]

Hi and welcome Marilyn  

I'm from Illinois, so I can't give you advice about doctors in Florida, but I can tell you that 7 mm is considered to be small.  You mostly likely have the choice of radiation or surgery to treat your AN.  And IMO you should research both and decide which treatment option is best for you.  You can also probably watch and wait for a time since most ANs are very slow growing.  

If you haven't already, I'd like to suggest you contact the ANA for some of their literature.  It's very good and explains everything about ANs and their treatment in layman's terms.  The ANA will also send you a WTT (willing to talk) list that has phone numbers and email addresses of others who have had AN treatment.  You might find others in Florida on that list.

Good luck,

Jan

[MAlegant]

Hello and welcome,
You've found the right place for support, information and really good people.  A couple of things to keep in mind: 
You will find the right doctor and treatment plan and will know by your comfort level and "gut" when you do
You will be fine
You will appreciate the little things in life
You will appreciate your family and friends
You have inner strength that you didn't know you had
Did I mention you will be fine?
Best,
Marci

[Jim Scott]

Hi, Marilyn:

Please accept my welcome.  I'm sorry you've receive a diagnosis of having an acoustic neuroma but, as you're probably learning, an AN diagnosis isn't the end of the world by any means.  7 millimeters equates to about a quarter inch, which, as many have stated, is considered small and likely can be observed (via annual MRI scans) for the time being.  My AN was 4.5 centimeters - considered large - which would equal about 1.8 inches, so you can see the vast difference and why a 7mm AN is considered small.  It's the location that makes it a problem. 

Unfortunately, because I live in New England, I cannot offer you any information about USF but I'm confident that other posters can and will.  Please try to remain calm (take a deep breath and let it out slowly) knowing that you have a benign tumor that is treatable and many folks here that are eager to support, inform and advise you.  You'll be O.K. 

Jim

[Debbi]

Hi Marilyn-

Welcome to the club that no one wants to be a member of - sorry you had to come looking for us, but glad you found us.

If you have the name of your specialist at USF, enter his/her name in the search box on this site and see if it comes up anywhere here.  That will give you some ideas as to whether anyone on this forum has written anything about your particular surgeon. 

As others have said/will say, take your time to seek out more than one medical opinion.  I think everyone here will agree that one of the MOST important things is to find a team that has experience treating ANs.  I would also encourage you to check out the Cyber-knife forum - you can post questions there and they have several doctors who will respond quickly.  Even though I had surgery, I did post questions on that forum in the early days of my diagnosis.  The site is:  http://www.cyberknifesupport.org/forum/

You may also want to send a copy of your MRI to the House Ear Clinic in Los Angeles.  They are one of the leading treatment centers for ANs and will give you a complimentary telephone consultation after looking at your MRI.  This can be very useful.  Thier website is: http://www.houseearclinic.com/pro_acousticneuroma.htm

And, of course, all of us here on this forum are happy to provide you with support and non-medical advice, so don't hesitate to post questions or ask to talk to some of us on the phone.

And, as Marci said ---- you will be fine!!

Debbi

[ppearl214]

HI Marilyn and welcome.

I can share (as noted above) that Battyprincess was treated (I believe) at Moffit... and Shands also does terrific AN work as well. Since your AN is deemed "small", there is also a terrific radio-surgery center of Palm Beach.  Those are the only facilities I am aware in FL (I'm sure there are more, both those 3 come to mind first).

Please keep us updated on how you are doing, if we can answer any questions... and know that we are with you during this time.

Again, welcome!
Phyl

[Marilyn55]

Thank all of you for giving me advice, references and knowledge knowing that everything will work out okay!


Marilyn55

[Nancy Drew]

Hi Marilyn,

I am curious as to what led you to have the MRI in the first place?  My AN was found by accident, and I feel very fortunate that it was caught when it was small.  I wasn't having any bothersome problems at the time of diagnosis so I chose to watch and wait.  These ANs usually grow slowly, and they often give one enough time to make an informed decision about what to do--W&W, surgery, or radiation.  As for size, my doctor said he has seen ANs as small as 2mm cause problems and larger ANs cause no problems (or at least presenting problems).  In my opinion, you should stay on top of your symptoms and not focus so much on the size of your AN.  My AN grew this past year, not much as you can see from my signature, but I started having symptoms.  I have decided to go ahead with treatment, but I think a lot of people in my situation would be content to W&W a little longer.  The most important thing to remember, in my opinion, is to do what feels right for your.  Gather your info, and you will eventually know in your "gut" what to do--but, be patient.  The gut feeling doesn't always come to you overnight.  Best wishes to you in your journey.  This board is a great support so you are on your way to becoming informed.   



Nancy

[Kaybo]

Marilyn~
HI!  Somehow I missed this thread, but a late welcome to you!  I believe that "Nancyann" is from Florida - she is a wealth of info and VERY encouraging - try to seek her out!!

K