Diagnosed Monday - any help appreciated

[rcaldw]

Hi,

Was diagnosed on Monday after an MRI the previous Friday.  Mine was measured at 1.4cm x 2 x1.5 cm  My ENT told me to take my time in getting information, recommended a Dr. to me in Houston (Joseph Chang, anyone heard of him?), and said that his "opinion" was Gamma knife.  Mine is on the left side.

At this point I am getting an appointment with a neurosurgeon, and then trying to get in to see Dr. Chang.

I've read enough already to know that it is worse having an AN than I thought.  When you hear benign, you think, "no big deal, take it out", but if I am reading correctly, it almost certainly means I will have to deal with SOME change after either surgery or gamma treatment.

Anyone have any early advice for me?  Does anyone, given the size of mine, have any suggestions.

Let me give you one hint.

I am a pastor, and the one thing I would really like to avoid is the facial nerve problems.  Is one technique less likely to affect it than others?

Thank you in advance.

[Desilu]

HI, Welcome to the AN forum. My personal suggestion would be to get as much information as possible, talk to different doctors and then consult with House Ear Clinic in Los Angeles for a final opinion. They will do this free of charge if you send them your films. You have to be comfortable with your doctors and your decision whether it is surgery or radiation. Please do not hurry your decision. Give it a lot of thought and then pray about it. There is life after AN! Best wishes on which ever treatment you choose. Ann

HEC July 26, 2005
Mid fossa 5mmx8mm Left AN
Dr. Brackmann & Dr Hitselberger

[jamie]

If facial function is very important to you, radiosurgery is definitely an option you want to give serious consideration. Not sure how your hearing is, but radiosurgery offers the best chance to save that as well if you have any left. Also, you may want to check into CyberKnife as opposed to Gamma Knife, it offers three treatment fractionation which is proving to be superior to one treatment with GK. Check out the radiosurgery forum on this site, there are many resources there that we've listed on the various threads.   

[Larry]

I concur with information gathering. I had a 1.5cm AN removed by surgery (middle fossa approach) 3 years ago and virtually have no hearing left in that ear. The AN has also grown back. This site has provided so much info for me that i will be going down the radiotherapy approach next time. Surgery doesn't mean that the AN will not grow back. One thinking that I have is to "keep it at bay" / shrink it for long enough that better treatment will be developed - perhaps through nano technology which is new and potentially exciting.

get different opinions, review this site - there are lots of views from people who have had every type of treatment available.

Good luck

Larry

[rcaldw]

If facial function is very important to you, radiosurgery is definitely an option you want to give serious consideration. Not sure how your hearing is, but radiosurgery offers the best chance to save that as well if you have any left. Also, you may want to check into CyberKnife as opposed to Gamma Knife, it offers three treatment fractionation which is proving to be superior to one treatment with GK. Check out the radiosurgery forum on this site, there are many resources there that we've listed on the various threads.  :) 

Right now I have SOME useful hearing in my affected ear (my left).  I can still talk on the phone on that ear unless someone is talking in a faint voice or there is other noise in the room, then I have to switch ears.

But more than anything, I don't want my speech affected, and I can't imagine having my facial function affected without my speaking ability somewhat affected.

[jamie]

One thinking that I have is to "keep it at bay" / shrink it for long enough that better treatment will be developed - perhaps through nano technology which is new and potentially exciting.

With radiosurgery, the goal is curative, so you shouldn't have to worry about nanotech. After five years, the chances of the tumor growing again are extremely slim, next to none.

Over a period of 26 years, I have personally treated almost 850 acoustic neuroma patients with Gamma Knife radiosurgery. I would like to share some of my experiences with you. Growth control - shrinkage or no growth - is achieved in at least 95% of the tumors.

Shrinkage actually is found in the vast majority of tumors when they are followed long enough. One year after the Gamma Knife treatment, shrinkage is confirmed in about one-third of the tumors. After four years, two-thirds of the tumors are smaller, and by 10 years, more than 90% have shrunk.

Signs of lack of response to radiosurgery, in general, appear within one to three years of treatment. At least in my experience, failure is extremely unlikely to occur when five years or more have elapsed. This statement may not apply for acoustic neuromas associated with neurofibromatosis 2 (NF2) in which case recurrence may occur later following Gamma Knife treatment as well as microsurgery.

http://www.irsa.org/acoustic_neuroma.html

Right now I have SOME useful hearing in my affected ear (my left).  I can still talk on the phone on that ear unless someone is talking in a faint voice or there is other noise in the room, then I have to switch ears.

But more than anything, I don't want my speech affected, and I can't imagine having my facial function affected without my speaking ability somewhat affected.

With radiosurgery, facial nerve injury is extremely rare. And there's also a good chance that you won't lose the rest of your hearing. You stated before that you are certain your life will be changed after treatment, but that is not always the case. CyberKnife offers a good chance to maintain your current quality of life, and sometimes even improves it.