New Member

[john]

I was just diagnosed with AN after going to the ENT for hearing loss in my left ear. A MRI showed a 7mm tumer on my left side. I have some symtomes like tinnitus, headaces infront and behind my ear and in my temparal area. Most of my hearing returned after about a week but the tinnitus seems to be worse then ever. It sounds like water running in my ear and is the worst when I wake up in the morning. The ENT said that they probably can save my hearing because we found it while the tumor was still small. What are my chances of recovering to normal after surgery? What surgery should I pick? Who is the best doctor in the country for this condition? I have alot of questions. This forum seem to have alot of info, look forward to hearing from all of you.

[jw]

Hi, John.

Welcome to the forum, if that's the appropriate thing to say!  From what I've heard, the House Clinic in LA is the defacto best there is.  With your size of tumor, radiation therapy is also a consideration.  I can't really say what is best - radiation vs. surgery.  They each have their good and bad points.  Radiation is less invasive, in that you don't have to undergo surgery.  And, there are a lot of people who have gone through the 'gamma knife' and had great results.  It's up to you and your doctors, but remember to keep all of your options open.  As you will hear from many people, do lots of research, study everything you can, talk to people and get a couple of opinions.  The most informed decision is the right decision.  At 7mm you have lots of time, although I'm sure you want something done right away!

There are different types of surgery that have varying degrees of success saving your hearing.  Also consider your facial nerve - it's important that they consider that as well, so that you don't have facial paralysis after the treatment.  Each person seems to have different problems and successes after surgery, and the skill of the surgeon seems to make a big difference.  For those who have been through treatment (I haven't, I will get my diagnosis either AN or not AN on Monday), they can offer a great deal more information for you.

Whatever procedure you choose, all the best to you!  Read lots, ask lots of questions, surf until your eyes fall out and then ask more questions.  Keep in mind that there are a lot more successes out there than you will be able to read about.  A lot of people who have great treatment and quick recoveries just want to forget about it and get on with their lives.  These people don't make it to forums like this.  Unfortunately, their input would be really great for everyone just going through the procedure(s).  However, just remember that statistics say 2,500 - 3,000 people in the US are diagnosed each year.  You'll only find a small fraction of this number on various boards and forums.  That must mean there are a heck of a lot of people out there who have made a complete recovery and are living a wonderful life post-treatment!

John

[shoegirl]

John,

Hi, I too am pretty new to AN.  Just found my AN about 3 weeks ago.  I have been researching and asking lots of questions of the members of this forum.  They have been all very open and honest.  I am favoring radiosurgery but that is just my preference.  I wanted to mention  a thread I started a few days ago under the "Radiosurgery" section and it is called "Informal Survey".  Lots of great advice, experience, etc from people on the board.  It has been extremely helpful for me.

Best Wishes! Suzanne

[targa72e]

Hi john,

I am also newly diagnoised. I found out 3 months a go, similar situation to yours small AN (4mmx4mm) but similar symptoms to yours. One of the things that you will find is that there are lots of options and it will be up to you to decide what is best and what fits for you. Some of the things to take into account are your age, your hearing level, recovery times % reaccourance etc.  From the surgical side you would probably have the optin of Middle fossa (to preserve hearing) or Trans Lab (you loose all hearing). There are also options for radiation Gamma knife, Cyber knife FSR etc. There is lots of information on the WEB (I have been mainly looking at pubmed) and lots of opinions. Good luck and welcome to a exclusive club you never wanted to join.


john

[Desilu]

Hi John,

The most important thing to do is research. Do not panic! Take your time in making the right decision that you are comfortable with. You only have one chance to do the right thing. Most of us are willing to help in any way possible. Especially those of us that have either had radiation or surgery. I chose surgery because my tumor was small and I only lost 10% of my hearing, which is still in the range of normal. After doing my research and talking to many people, I decided to go to House Ear Institute in L.A. Other than the airfare and staying at Seton Hall (a place to stay after surgery) my insurance picked up the rest of the bill. I am 100% happy with my outcome and I am one of the success stories that people talk about. HEI will read your MRI's and call you with the results at no cost to you, if you send them your films. I wish you best with whatever you decide. Please feel free to email me if you have any questions. Ann

HEI July 26, 2005
5mm x 8mm Left AN
Dr. Brackmann & Dr. Hitselberger

[john]

Thank you everyone for the info. It has really helped me to make my decision. I`m leaning toward radiation right now but that could change in a minute. I`ll keep you informed.
Thanks again!
John 

[shoegirl]

John,

Hi, I wanted to send you these links, you may have already come across them, I found them helpful.

http://www.anarchive.org/spread.htm

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

http://cancer.caring4patients.com/News.34991.aspx

http://www.acousticneuromafoundation.org/anyboard9/AcousticNeuromaFoundation/AcousticNeuromaFoundationMessageboard/index.html

http://andb.info/

http://www.hopkinsmedicine.org/radiosurgery/treatmentoptions/stereotacticradiosurgery.cfm

http://seton.net/SpecialtyPrograms/BrainandSpineCenter/ServicesandTechnolo0965/CyberknifeatBrainSp0C9D/ComparisonofCyberKn18F8.asp

http://hearingloss.upmc.com/AcousticNeuroma/

http://www.thebarrow.com/index.asp?catid=au&pg=ps_acoustic_neuroma&supnav=ps_acoustic_neuroma_supnav

Hopefully, I haven't given you too much information and hopefully some of these sites will be ones you haven't already seen - if not sorry!  I included UPMC, John Hopkins, and The Barrow's Institute incase you needed them.

I hope all the links work! I'll email my friend regarding Dr. Bigelow too.  Also, sorry if you receive this more than once! My daughter kept trying to help me when I was working on your message.  I tried to send you a private message but I am not sure if you received it or if only part of it was sent.  Sorry for the overkill!

Best Wishes! Suzanne

[Sam Rush]

 Generally considered the best in the world=  Dr. Brackmann at House clinic.  With your small tumor, and remaining hearing,  ,a mid fossa surgery is your best choice. Radiation would be if you had other medical problems and were a poor surgical risk.

Best wishes, and don't make any sudden decision, remember these are benign slow growing tumors, and yours is quite small.

[Mark]

While I would certainly recognize Dr. Brackman as one of the most experienced AN surgeons and that a Middle Fossa approach would be appropriate for a small AN such as this, I do respectfully disagree with Sam's characterization of where radiosurgery is appropriate as outdated and inaccurate. Based on my conversations with neurosurgeons at stanford, over the past few years the percentages of AN's treated by radiosurgery and surgery is about equal. If you eliminate the number of patients who had large AN's where radiosurgery was not an option, then a higher percentage who had a choice went the radiosurgery route. Certainly of all the folks that I've interacted with over the past 4 or so years none had other medical problems or was a surgical risk.

Either Radiosurgery or mid fossa surgery in the hands of a skilled AN surgeon should create could results in an AN this small.

Mark