Newly diagnosed

[LisaP]

Hi,

My name is LisaP.  I'm a 45 year old mother of three grown children, grandmother of one and married for 27 years.  I was diagnosed on March 31st with a small vestibular schwannoma.  I first started to have symptoms back in October of 2007.  It started as a tooth ace.  I went to my dentist who xrayed my teeth to find nothing wrong.  Around December through February of 2008, I then started to have symptoms of what is called trigeminal neurogial (please pardon the spelling), I had pain that went from my tooth on the right side of my face to my ear.  The pain was intermittently.  I again went to my doctor who put me on an antio because she thought I had a sinus infection.  Finally in March I had an MRI and the tumor was discovered.  I then went to the Mass Ear and Eye Infirmary in Boston and spoke with three specialists for two hours.  The decision was made at this time to have another MRI done in August to combare growth.  I'm looking for support and people to talk to because I am scared and I am at the beginning of trying to understand what is happening.  I hope someone responses.
Waiting to hear

LisaP

[Kaybo]

LisaP~
I am sorry that you have an acoustic neuroma, but I think you have come to the right spot.  We are just a bunch of people who have either had an AN, have someone in their life with one or just hang out here because we are incredible, FUN people!!  Feel free to ask anything...nothing is too crazy to talk about because chances are, someone else has experienced it too.  It will really help everyone if you could give us more details like the size of your tumor and where you are located (so that different people can give you their experiences with different docs).  If you have not contacted the ANA, they have some great literature that will help you and your family along too.  Please feel free to contact me (you can send a PM on left of screen) and I would be more than happy to speak with you on the phone. 

K

[leapyrtwins]

Hi, Lisa   

I see that you are in Massachusetts.   Several of our forum members are also on the east coast; some may even know the doctors you are consulting with.

As K said, if you haven't already done so, you should contact the ANA and ask for some literature on acoustic neuromas.  The literature is very helpful and will explain in simple language what an acoustic neuroma is, the treatment options available, etc.  I'm sure the specialists you talked with also gave you a lot of information about acoustic neuromas, but I know from experience how overwhelming it is to be diagnosed and I also know that lots of docs speak in very technical terms 

In addition to the literature, the ANA will also send you a WTT (willing-to-talk) list of patients from all over the U.S. who are willing to talk via phone or email.  I live just outside of Chicago and I am on the WTT list.

Of course, there is also this forum - which is a tremendous resource for information and a great place to find support.  I know this because I spend a lot of time here myself 

Do you know the size of your AN?

Jan

[Jim Scott]

Hi, Lisa:

Jan and Kaybo beat me to all the good advice and I hope you'll heed their suggestions.  I'll just add that the two main things to keep in mind are that an Acoustic Neuroma (Vestibular Schwannoma) is almost always benign (non-malignant) and treatable, either with micro-surgery or radiation.  It is not a death sentence and although serious and possibly life-altering, many AN patients have fairly large tumors, undergo surgery and/or radiation and resume their normal lives.  I'm one of those - and so is Jan. So are others who regularly post messages on these forums.  As previously stated, this website and the message boards are a wonderful resource for you and I hope you'll take advantage of them in the weeks to come.

Meanwhile, try to focus on the positive and not allow fear to panic you or make you so anxious that you make hasty decisions.  Doctors will often have conflicting opinions on how best to proceed but ultimately, you'll have to make that decision and you'll have to live with whatever consequences ensue, so get educated and stay calm or at least, in control of the situation.  The folks on this forum are ready and eager to help in whatever way possible.  We're not doctors and don't dispense medical advice, just practical advice.  We've all been where you are or know someone who has.  You are definitely not alone in this, Lisa.

I trust you'll be a frequent visitor here and feel free to ask anything you need to know and can't find elsewhere or simply don't understand, as AN nomenclature is sometimes a bit arcane.  We can interpret, if necessary...and it may be necessary at times. 

Thanks for posting.  I wish you better days to come. 

Jim   

[Kaybo]

Jim~
I think I have a wonderful, productive and fairly normal life too!!   

K

[LADavid]

Hi Lisa

I too am sorry that you had to have an AN to find your way here, but you did find your way to the right place.  You, as everyone else as said, will find this group to be very supportive, caring and knowlegable.  As you progress along your journey, please ask questions if you have them.  There is a wide variety of AN experience here and I'm quite sure that someone will be able to provide some direction.

In the meantime, best wishes.

David

[fbarbera]

Hi Lisa, It sounds like your AN is on the small side, which means you will have plenty of treatment options and good odds for having few effects from the tumor.  As others have suggested, when and if it comes time to treat the tumor, check in here regularly as the process of researching and deciding on a treatment can be challenging.  I have a fairly large AN (about 2.6 cm) and I lead a completely normal and active life.  I wrote about my experience on the website below if you are interested.
There may be some bumps and rough patches but overall, you will be fine. 
Francesco

 

[Debbi]

Hi Lisa - and welcome to our whacky little group.  No question too crazy, and wonky-heads welcome 

I understand how you are feeling right now - I went through diagnosis myself in early March and can well remember the rollercoaster ride of emotions.  Fortuntately there is a lot of information online about acoustic neuromas, lots of people (me included) who will be happy to talk with you and answer questions, and you have TIME. 

I know how hard it is to try to relax right now, but try not to make yourself crazy with worry.  And, don't panic! 

You did make a very interesting point about the tooth/jaw pain. I had never connected this myself, but as I think back, I remember telling the dentist probably a year ago that I was having pain on the right side (my AN side, as it later turned out).  He exrayed and found nothing - but I now wonder, based on your comments, if that was yet another symptom on the tumor.  So many little signs fall into place once you know what is going on.

Lisa, don't hesitate to ask questions - we're all here for you, and we've all gone through or are gonig through the same things as you.  You're not alone.

Debbi, wobbling about in NJ

[goinbatty]

Hi Lisa,
Sorry to hear about your neuroma.  Everyone on the forum is extremely helpful and supportive.  I spent countless hours on here prior to treatment and even though I don't write that much now, I still chime in every now and then.  
My AN was small too.  My only advice is to take your time researching, consulting and try your best to not worry even though that's easier said than done.  
Just a little bit of advice regarding this site that stupid me didn't utilize enough to begin with - the search option.  Call me slow I suppose.  It's very helpful.  
Take care,
Sandra

[LisaP]

Thanks to all who responded to my posting.  I hope to utilize this site often to gain knowlege and friends.

thanks,

LisaP.

[lori67]

Lisa - I think you'll find both knowledge and lots of friends here!   

I've heard a lot of good things about Mass Eye and Ear, so sounds like you're in a good location.

Feel free to ask any questions!  Take care of yourself and good luck to you!
Lori

[wendysig]

Hi Lisa,
Welcome to this forum.  Looks like everyone beat me to all the good information and advice for now.  This site has been heaven sent to a lot of us. Feel free to ask any and all questions and vent if you need to.  That's what we are here for.  You will find a lot of good advice, friends to commiserate with and zanniness here.

Best wilshes,

Wendy

[cmp]

Hi Lisa, and welcome to the ANA forums. So glad you have found us--you'll find a wealth of info and support here.

I'm in Massachusetts, too, and had a 1.8 cm AN (a regrowth of a much larger tumor removed 20 years ago) removed on June 24; the symptoms that led me to a the diagnostic MRI that uncovered the recurrence were similar to yours: Trigeminal neuralgia-like pain, intermittent and very mild, though, and (here's the kicker) on the non-AN side.

I'm now 2 weeks post-op after a quick, very successful surgery (total removal, no complications), and am doing very well (my hearing and balance were sacrificed in my first surgery, so I've made all my amends and there were no new surprises this time around). Other than major league fatigue, my big issue has been--you guessed it--TGM-like pain, this time on the right (AN) side, and much more intense than before. (My main trigger right now is trying to do too much orally at the same time--ie if I try to hold a conversation during a meal, YOWCH!)

According to my truly wonderful neurosurgeon (Dr Robert Martuza at MGH), this symptom is a temporary one, due to the trigeminal nerve "waking up" now that the AN that was compressing it is gone. The analogy he provided was to think of how after your leg falls asleep, you experience pain as you stand up and try to get it to "wake up" again. Anyway, it should resolve as part of my healing process; though Dr Martuza prescribed a medication ("Neurontin") that's used to treat nerve pain, I think I will probably just be patient (and try to refrain from talking while I eat  )

The other piece of info I can share with you is that Dr Michael McKenna (of Mass Eye and Ear) was to have been part of my surgical team, but as it turned out the procedure he was going to do had already been done in my '89 neurosurgery (Dr Martuza didn't learn this till they opened me up, because my '89 medical records had been destroyed by the FL hospital--oy vey!)

Dr McKenna still made it a point to visit me while I was hospitalized--I can't say enough good things about him (and like Dr Martuza's, his rep is stellar).

Hope some of this info is useful to you, and feel free to PM me with any questions that may come up. Since your AN is small, you have many options and plenty of time to research them. Good luck to you on your AN journey!

Carrie

[Omaschwannoma]

In response to "cmp" and records destroyed after many years I would like to suggest to all "newbies" to get copies of ALL reports/films and start your own medical file at home.  After being gone from the US for seven years I learned from my PCP most do not keep medical records after seven years and will dispose of them.  I had to start over from scratch when I returned which didn't cause a problem anyway in any diagnosis with my health.  For the record though, I started my own personal file at home from there on out and to this day continues.  Carrie, i'm sorry your files were destroyed, but glad it did not cause you any harm--other than frustration. 

[sharondb]

Hi Lisa,I was diagnosed with AN and decided to take a wait and see approach,well its been a year and the tumor has grown,so I am going to have surgery soon,I am very nervous also,but I think being able to write to people in the same boat will be helpful for both of us,I have been to several different surgeons,and of course one did not agree with the other,so I am actually confusing myself more,actually if anyone out there is reading this please share your experiences as far as facial nerve problems and any other downside......hope everything goes well for you Lisa...Take Care Sharondb