Face Numbness with AN...NEED ADVICE

[kjmema]

I'm new here and need some ADVICE.  For three months I've had one side of my face going numb.  No pain and no paralysis.  Just a tight numb feeling.  After several doctors and a CT and MRI they have discovered a small, (3mm) AN on the left side.  I have NO AN symptoms.  No hearing loss, dizziness etc. and the doctor seems to think the facial numbness is not related.  NOW to make matters worse two days ago the other side of my face started feeling numb.   :-\  This goes from my forehead all the way to my chin and around behind my ears.  Has anyone had this with such a small AN???  I know it's the trigiminal nerve but I either have two things going or the small AN is causing the problem.  I just have to belive there is a connection somehow.  I'm 64 and pretty healthy.  My only med. is Synthroid which I've taken for years..  ALSO where does everyone go to find good doctors.  I've found that Mass General and Mayo seem to be the best but they are a long way from Missouri where I'm located.  I want the best doctors avaliable.  My doc. here says the AN is so small that they will just watch it.  I've read that there are noninvasive treatments to keep it small.  ANY information would be appreciated

[Derek]

I am not aware of any non-invasive treatment that ensures the growth of the AN is halted. Can you enlighten us please as to where you read about that?

Regards

Derek

[amymeri]

My first and only symptom of my large Acoustic Neuroma was right sided facial numbness. 

I think the treatments you are referring to might be gamma knife or cyberknife which are radiation treatments to halt the growth and hopefully shrink the tumor.  It is certainly not without side effects and risks but a wonderful option for those with smaller tumors like yours.

The House Clinic in Los Angeles is probably the best place nationally, but there are many ENTs and Neurosurgeons that could manage your AN.  Do your research and look for a major teaching hospital nearby.  Call House and ask for recommendations for surgeons in your area as well.

Good luck! And Welcome to the board,

Amy

[amymeri]

Ooops, I replied to your post and then saw your personal message!  My tumor was removed by a neurosurgeon who specialized in skull based tumors.  It was big (4cm) and most of the tumor was outside of the internal auditory canal.  A tumor as small as yours is definitely a candidate for GK or CK.  Good places are Pittsburgh and the Cleveland Clinic.  You can make just one visit for treatment!  A friend of my husband's went to Pitt last week and was treated and back to work a few days later.  A far cry from the 4 months off work and continuing recovery that I had.  Small tumors can cause lots of symptoms but are much easier to treat.  Usually facial numbness is a sign of a larger tumor but could be a result of WHERE your tumor lies or of your particular anatomy.

There is no rush with a tumor that small, but I would investigate the GK/CK as one option if you can't stand the idea of watch and wait!  For some people WAW makes them crazy and they just need that tumor gone!

Amy

[Derek]

Hi again kjmema...

Apologies if the non-invasive treatment you referred to was in fact radiosurgery / radiotherapy...in my haste to find the elixia I was thinking that there was something else available that I had missed!

Regards

Derek

[kjmema]

Thanks for the replies.  Non invasive to me is anything that doesn't involve major knives and a lot of blood...I'm just learning about the treatment options.  That will be my next study lesson.  I'm not so sure about the watch and wait idea either.  I've heard about the clinic in Las Ang. and the one in Cleveland also is mentioned a lot.  I would like to go somewhere for a second opinion and maybe another MRI. .At any rate I think I can safely wait until March when the weather will be better.  I'm not too big on going North in the winter and Las Ang. is a long way from home.    Also by then I should have a line on the facial numbness, which will either get better or worse.  This site is amazing.  Thank you all so much for staying tuned in. Hopefully at some pt.  I'll be able to return the favor to someone who is newly diagnosed.  Karen

[Dealy]

I take it you are from the State of Missouri. If so-you did not mention a Doctors name. However with that small of a tumor you might want to see a Dr. Thedinger in Kansas City. He was trained by the people from House Clinic. I have heard with small tumors that a small incision can be made behind the ear. Yes it is surgery but it may not be that evasive. You might want to check him out. He is good for surgery. If you want radiation-that is another story. They have opened up a new CK center in Boulder Colorado. Good Luck. Ron

[kjmema]

Thank you Ron....I'll look up the KC doc...I'm in Springfield.  I don't have a neurosergeon as yet.  I have an apt with a Neurologist in Jan.  The one who reviewed my MRI is a Dr. John F. Ferguson.  I know a few people who have had back surgery with him and the outcome was not good. 

[Dealy]

Dr. Thedinger is an Ear-Nose and Throat Specialist in Kansas City. He did my first AN surgery 17 years ago in Kansas City .He now works with a DR. Camaratta that is a Brain Surgeon. Depending on your decision-if surgery those two are the best in the MIdwest. If I have a regrowth of my AN I will not hesitate using both of these Surgeons. If you talk to DR. Thedinger at all before the end of the year-tell him HI from Ron in Hays, Kansas. I intend to write him after my results from my next MRI at end of December. I do not know what is causing your facial numbness with a tumor that small unless it is coming off that nerve.

[ppearl214]

Hi kjmema  and welcome! Another Boston brat here! :)  Just outside on Rt 128/I-93!

OMG! We have everything right here in our backyard!

MGH for microsurgery and Proton radiation for AN treatments!
Beth Israel for Cyberknife Radiation
Tufts and Providence for GammaKnife Radiation
Brigham Womans for Novalis radiation

MGH and BW have FAB brain surgeons (MGH with McKenna/Barker.... BW for Peter Black)

Your AN is small... sounds like you are doing what you need to at this stage... know that there are many of us locally and we've all had different treatments (ie: Crazykat Paul, jcinma Jane and kbonner Katie had surgery at MGH, I've had Cyberknife at BI, ellenvig ellen had Gammaknife at Providence) and we are always around to loan our good ears.

hang in there... and know that we're here for you. The drinks are watered down but we're here to help!

Phyllis

[lmurray69]

where in Missouri are you..I live in sedalia...I had surgery in LA in nov 1st 06..I am 30 days out..I woke this morning and my face is pulling down from eye to corner of mouth..I am a diabetic and it has increased my sugar levels.. I have not had any problems other then dizzy after the surgery..and House is wonderfull.they treat you with respect too..I am so glad that I went and my tumor was small too..I am deaf on AN side left..Wear a aide on right.. if you have any ? email me just touch my name and it will give you my email