Trying to Get Information

[hcporter]

Hello all, I never post to forums so I guess that shows how desperate I am!  I live in Atlanta, GA and was diagnosed with a 1.5cm AN by Dr. Mattox about 6 weeks ago.  He recommended surgery using the RS approach to preserve hearing.  He also suggested I meet with Dr. Olson.  In my meeting with Dr. Olson, he seemed more favorable toward radiation but said I was a "good candidate" for surgery.  I then decided I should get more informed so sent my scans to the House Clinic.  I had a very helpful conversations with Dr. Luxford who indicated surgery was a good option but also felt I could wait and watch.  I have decided wait and watch won't work for me - whether real or imagined, the symptoms are too distracting!!  I'm leaning toward surgery but trying to decide whether to do it in Atlanta or travel to House.  I am hoping to get information from Dr. Mattox's office on numbers of RS surgery performed by him as well as the results but have not received anything yet.  Does anyone on this forum have any information?  I also have messages in to House to understand how they would work with my insurance (BCBS GA) and how soon I could have the procedure done.  I'm waiting for call backs there as well.  It seems that each step in this process takes a couple weeks!  Frustrating for a type A personality type...  If anyone has suggestions on other avenues I should pursue or stats that could help with my decision, I'd really appreciate hearing from you.

[Jim J.]

Sorry to hear about your diagnosis. I also live in Atlanta and was diagnosed with a 1.6cm. A.N. April of 2012. I spoke with two doctors in Atlanta one being Dr. Maddox but after reading posts here and doing some research on my own I decided the only place for me is House. The Doctor I chose has done over 1000 of these surgeries. Rick Friedman will be doing my surgery on the 28th of August but he is leaving House to take a position with U.S.C. on Sept 1st. I don't know if he will continue doing surgery there or not. I think even if I couldn't get him I would have chosen a Doctor at house. There are actually 2 methods of Surgery to preserve hearing. The one Friedman recommended for me was the middle fossa approach.
I would suggest you take some time and do some research and weigh your options. I felt like surgery was best for me but there's also radiation.
As far as Insurance, I had to wait 5 months for my company's open enrollment to change from an H.M.O. to a high deductible P.P.O. plan to be covered out of state.
I wish you luck with whatever you decide and I'm sure everything will work out. Take a little time and think about all your options and do what's right for you.

[arizonajack]

I live in Atlanta, GA and was diagnosed with a 1.5cm AN by Dr. Mattox about 6 weeks ago.  He recommended surgery using the RS approach to preserve hearing.  He also suggested I meet with Dr. Olson.  In my meeting with Dr. Olson, he seemed more favorable toward radiation but said I was a "good candidate" for surgery.

How much hearing have you already lost?

My opinion for the two cents that it's worth is that your current hearing loss is a critical factor in whether you choose radiation or surgery.

Meantime, read these:

http://thejns.org/doi/pdf/10.3171/2012.6.FOCUS12192

http://thejns.org/doi/pdf/10.3171/2012.7.GKS12783

I agree with your decision to not Watch and Wait. Watch and Wait is for people who already have lost substantial hearing. People who still have good hearing and don't want to lose it need to act quickly to preserve it.

[kmr1969]

I had BCBS MD and went to House.  I paid a $1,000 deposit to House the day before surgery and also paid about $300 to Dr. Stefan, the internist, but other than that, it does not appear that I am responsible for anything additional to St. Vincents, etc.  The staff at House seem to be very up on insurance so they should be able to steer you in the right direction.  Still, make sure you verify everything with your plan before you make your decision.

I highly recommend House if you can do it, but it does involve extra costs (plane, Seton House, taxis, etc.) and stress (being away from home for 2 weeks) that you could avoid by staying closer to home.

Best wishes for a successful treatment and speedy recovery whatever you decide,

Ken

[arizonajack]

I then decided I should get more informed so sent my scans to the House Clinic.

Maybe it's just me, but I wasn't too impressed with House. I send my MRI CD to House and got a call back from Dr Wilkinson. He recommended translab surgery. I expressed my concerns about balance. He told me that the vestibular nerve gets severed during surgery and the other side takes over to compensate for the balance. My subsequent research and consults revealed that the balance issues improve but never completely go away regardless of surgery or radiation.

There's a support group in Atlanta. You might contact the group and see who has used who in Atlanta:

Leader: Cindy Jones
770-833-8529
cynthjones678@netscape.net

Always better to be treated where you live if you get quality care.

[sidecar Kathy]

Hello hcporter,
I had TransLab surgery on March 14th by Dr. Olsen and Dr. Mattox.  You can not ask for better doctors to take care of you.  Emory Hospital is amazing and the nurses and staff are by far the best.  I had my AN that I was diagnosed with in 07 and chose to W&W till October of "12" when my local ENT said that my MRI had shown some growth, it was 1.7 cm.  It was scary hearing that but I knew some day I would have had to deal with it.  I did not find the ANA until Nov. of 2012.  I met another aner through that site and she had Dr. Olsen and Dr. Mattox perform her surgery also.  I also got a second opinion from the "House Clinic" and felt that the doctor I talked to tried to sway me to go to LA instead of going to Atlanta.  For me personally I didn't want to travel 2,000 miles and be in a strange place and not be surrounded by family and friends.  Plus also the extra cost for the trip and staying there till you have your post op appointment.  Its a hard decision and one you should research throughly.  If you are having a hard time getting answers from Dr. Mattox talk to his nurse Mary as she was a lot of help to me when I had questions.  We did it though email and it was a great way to get questions answered.  Mary had suggested I have Vestibular testing to find out how bad my balance was.  Lisa is the Vestibular and is awesome!!!  Someone mentioned Cindy Jones the support leader in Atlanta.  Cindy is a great person to talk to and give you advice.  Cindy went to "House" for her surgery.  Cindy met me the day before I had my surgery and it was so wonderful to talk with her and actually meet another person that knew what I was going through. 

Good Luck on your decision and feel free to PM message me if you would like more information or we could talk on the phone.

Kathy Rhoades

[sidecar Kathy]

I forgot to mention that there are a few Acoustic Neuroma Facebook pages that have wonderful and caring people on them that are there to support you and answer your questions also.  Its amazing even though these people don't know you they are there to help anyone on their journey. 

Kathy