Just diagnosed in Michigan...Lots of questions

[JayJay]

  Well, I just got the news from my MRI that I have Acoustic Neuroma on my right auditory nerve.
At least they are benign. So, who would like to help me throught the process of picking a doc to remove it surgically or GK radiation treatment. My doc mention he is contacting the Michigan Ear Institute in Farmington Hills. I was wondering if there is anything closer since I am In Traverse City. About 230 miles away. I read something about Midland having a clinic. But would like the best doc I can get. I am on disability for some other health reasons. I printed out the question form from the A.N. society. You can write me here or at my email. jcjonesy195718@yahoo.com
I am 49 and in general good health.

[Sue]

Hi JayJay,
Welcome to our club.  There are a lot of good people on here who will do their best to help you and answer any questions you might have.  Yes, it's always wise to seek out the most experienced surgeon you can get for these pesky ANs.  I had Gamma Knife, so I can't address your surgical questions very well, other than to pass along what I've learned on here. Which is to the aforementioned advice, and to try to learn as much as you can.  Depending on the size, location and symptoms you might have a lot of time to decide what you want to do.  Don't let surgeons talk you out of looking into GK or Cyberknife if that is what you feel is better for you.  And don't let the radiation guys scare you away from surgery if that's what you want.  Just make sure you go to the very best facility that you can, and that your expert is very experienced.  You can always get a free second opinion from House Ear Cllinic in Los Angeles.  Many on this forum have gone there.  They are one of the premiere places to go for surgical removal of Acoustic Neuroma.  I'm sure the mid-west people will tell you about facilities near you and about GK or CK centers in  your area.  Good luck to you and with your treatment. 

Sue in Vancouver

[Obita]

Hi JayJay:

Welcome.  If you just found out you have an AN you must be overwhelmed with information.  It does get easier to digest all the info when the shock wears off.

Did they tell you how big yours is?  Are you having any symptoms?

I found this site with a list of Drs. in Michigan recommended by AN patients -

http://mywebpages.comcast.net/wiggins706/acousticphysicians.htm#Michigan

I am two and a half years post op and I am just fine.  I could not do radiation as my AN was touching the brainstem.

Best of luck,  Kathy

[SuzeAN]

Gather all your information, read lots of posts on this website and check out all your options, Cyberknife, Gammaknife or surgery.  It can be overwhelming, but you will get through this and come out of it very knowledgeable on the subject.  Wish you the best  as you proceed, this site is a great place to start.

Cheers,
Sue (Las Vegas)

[Laura]

JayJay - glad to see you found this site. Welcome aboard.

[Jeanlea]

JayJay,

Welcome to this forum.  Sorry you have to join this group, but it is a great bunch of people.  I am also from Michigan, but I'm from across the water from you.  It was closer for me to go to Milwaukee.  It was about a four hour trip for me.  From what I've heard on here the Michigan Ear Institute sounds like a good option in Michigan.  I have heard of others going there.  As everyone says, do your research on your options.  Keep us posted.

Jean

[Sam Rush]

FYI

I know it would be inconvenient, but the worldwide experts w/ the best results are at House clinic in L.A.  With your  otherwise good health, they would have a 98% chance of excellent outcome.  I had my surgery there 2 yrs ago, and was back at work as a medical doctor in 2 weeks, w/ no complications.  good luck   

[tony]

I was sorry to hear of your troubles
Forgive me here for the lecture
It is usually best to deal with those who have the most experiance
in this area - an extra journey, or the extra time involved maybe repaid
1000 times over in terms of recovery (speed and outcomes, etc, etc)
Travel a bit, meet a few specialists - then make up your mind.
The extra mile investment is worth the effort
Good luck in your quest
Best regards
Tony

[GOIN2LA]

 Hello JayJay, my wife found out on 10/20/06 she had a AN, we went to MEI in farmington hills met with Dr. Bojrab, he is definetely one of the top surgens in the country for traditional removel, he also knows surgens for House clinic in L.A.. For us though he was not the one. My wife is 29 years old, and we have a 6 mo. old baby, so we wanted somthing not so invasive, we just got back from L.A.were Dr. Shahinian  remove her 4 cm  AN endoscopically, she has a 2in incision with 8 staples, she was out of the hospital in 2 days, up and walking in 1. You can get more info from his web site www.skullbaseinstitute.com. I spent many, many hours doing my resursh on this Dr. and could find no negitive facts, only some negitive opinions on procedurer, let me stress no facts just hype. My advise is to do your own reserch and once you deside what you feel is best for you than talk to as many people as possible who used the same doc as you.

Jay, feel free to contact me at mcgowen6@yahoo.com if you want to talk I can give you my phone #.  (this is the wife)  In my opinion since going through this one thing i've learned is medicine is more about business then the patients best interest.  Also God is ultimately in control!!!