AN Day from heck!

[red]

Ok I just got to tell somebody this story.  For the past two weeks since my husbands diagnosis of 1.5cm an we have been on a roller coaster ride with insurance.  Two different people at the insurance company told us that we were cleared for out of network services at in network benefit levels.  This was b/c there is a clause in our insurance that says that if there is no provider in network to do the service that you may go out of network to get it.  So we thought great! since we are cleared to go out of network let's make sure we can go to the House as well.  So we called back and the lady said you are not cleared to go out of network!  She said she had to call everywhere in Idaho to make sure that there was not any surgeons that could do the surgery if there is then you have to go to them.  Bubble burst!  I told her that we had an appointment on friday and needed to be cleared by then.   After leaving four voicemails and her not calling back, I finally got her on the phone and she said she still had 10 more to call.  I wanted to say,"Lady I live in southeastern Idaho the only thing you can find ten of are cows and potatos!  That was last night at 4:45pm.  So we are on our way to Salt Lake this morning and I call to make sure we are cleared.  They tell me Amanda doesn't work here anymore!  I said you mean to tell me she was fired overnight!  They just said,"Ma'am I just said she no longer works here." 
Well I finally took the advice or someone on this forum and got a insurance mediator.  Good news!  We are cleared to go wherever we want.  We had our consultation with Dr. Warren at University Hospital.  He wants to do middle Fossa b/c of hearing preservation.  We have other consults coming up.  This guy is brand new.  The nurses were teasing him about not knowing how to put his name tag up on the door!  That's how new he is!  Don't think we'll be going with him.   All you middle fossa patients let us know!  good decision or bad!
lisa

[nipanddale]

Hi, Lisa!
It's important the you feel comfortable with your doctor. AN's aren't something I'd want a greenhorn wrangling with.

I was diagnosed in May with a 3.5 cm AN. The docs here in Michigan were scalpel-happy, and my wife was just uncomfortable after they told us I'd likely be under their knives three separate times over a period of two years-- and they had predicted that my fledgling career as a teacher would suffer some very significant interruptions. Needless to say, we were distraught.

My wife isn't someone who commits to the first ANYTHING we shop for. So, she found the House Ear Clinic in Los Angeles (The world leaders in Acoustic Schwannoma removals) online. She mailed a copy of my MRI to Dr. Brackmann. He personally called me, and, witout asking what the Michigan docs had told me, said that he could remove it all in one operation, AND insert my BAHA implant in one surgery!

If you read this message board enough, you will see the House clinic is among our favorites. they're simply the best. I had my operation on July 1st, 2006-- and was walking three days later. I am now almost fully recovered, just some numbness on the left side of my head, and back to work.

We are still trying to straighten out the insurance and billing mess, and the trip to L.A. was a little expensive (you can stay at the hospitals hospice house for about $40 per day-- that really helped!) but I had the best care in the world. Priceless!

So- if you're uncomfortable, shop around! Good luck! Keep us informed!

Dale

[Battyp]

Red I can hear your anxiety in your type! Take a deep breath!
Ask anyone you consult with
1) How many AN's do you see in a month?  in a year? 
2) How many have you treated in the last month?  year?
3) How many had facial paralysis, or non positive outcomes?

and that's just for starters.  Most doctors see an average of 50 or less AN's in their entire career.  You want the guy who see's hundreds in a year.  My sister in law is a multidegreed nurse running a cancer hospital in seattle.  She gave me a list of questions to ask the doctors I saw.  Those were the top 3 I remember.  I know the ana books have a list of questions to ask that was a good list.  I remember taking that list, a notepad, my extra set of ears and going question by question and writing down my answers.  If the doctor isn't willing to do that then I'm not willing to let him play with me head 

Ok, now take a deep breath!  Unf. the rollercoaster ride will last for a while.  I'm thinking we all got on the same coaster at one time or another but we can all attest to the fact that eventually that sucker does stop! 

All my best to you!

Michelle

[Patti UT]

Lisa,

   I mentioned on the thread of your first post, that my surgery was at the U0fU in SLC. That I have never heard of Dr. Warren, but now that I think of it, the name sounds a tiny bit familiar, like maybe he was one of the Residents when I had my surgery, and maybe he finished his residency and is a full Doc there now?? I don't know, but I as I suggested before, Get the information Batty Princess listed. If you are going to go to the Universtiy Hospital, demand that Dr. Clough Shelton do your surgery. He was at house for many years, he is an expert in the removal of AN's and does many a month. Pweople go there from all over to have him do the surgery, like they do at House. My first choice was House, but in looking into Sgeltons background, I felt comfortable with his expertise with AN surgery. Although I didn't much care for his bedside manner, I felt he was equally as good as going to house, and I got to stay close to home.  PLEASE!  PLEASE! PLEASE!  DON NOT LET A NEW DOC DO IT,   NUMBERS COUNT.
Again, I am fairly close to you. I live in Park City Utah, about 30 miles from the Uof U hospital. I would be happy to go into detail of my experiences there if your considering the U and if your interested, just email me direct, I'll give you my phone#

Patti UT

[Patti UT]

Lisa,  Sorry for the type o"s in my last post,  But FYI,  If the University of Utah is a consideration, call House and inquire about Dr Clough Shelton, since her worked there  for many years.
 Patti UT

[Captain Deb]

I would definitely try to consult with a radiosurgeon as well, considering the size and location of your husbands AN. 

Capt Deb

[red]

You guys are the best!  thanks for talking to me.  Patti,  I'll be emailing you soon to get your number.  I hope to pick your brain a littlle.   Battyprincess,  I have my questions and I am armed and dangerous!  Cap deb,  I  am currently looking for a radiosurgeon to consult.  And I plan on looking into Brackmann at the House.  In fact I'm sending our information on monday!  This has been the best place for me to go for support and info.  We really appreciate all you do and type!  Our next consult hopefully is with Dr. Reichman at LDS hospital in salt lake city.  His secratary told us that he does these surgeries with Dr. Shelton., so that should be a good combination and that they do a lot of them.  The most frustratong part of all this is how far apart the appointments are.  The waiting in between drives me nuts.  I just want to see them all, Make a decision and get on with life!  have a good evening out there.

[Battyp]

Red, Gamma and CK centers will do a phone consult too.  they want a copy of your mri and radiologist report.  I contacted one in la somewhere. I know there is one is Fl and Boston, AZ, and seattle...I'm sure I'm missing a few inbetween those are just the ones I know about  You're last post sounded better...your to that kick butt and take name stage I call it.  Get er' done!  Keep us updated! 

[Desilu]

Hi Lisa,

I can't say enough good things about House Ear Clinic. Dr. Brackmann is very good and so is Dr. Hitselberger (the neurosurgeon). I had Middle Fossa surgery in July of last year. Things turned out really well for me. They did save 85% of my hearing in my surgery ear. The price of staying at Seton Hall has now gone up to $50.00 per day but is still cheaper than any hotel in the area. If you have any questions please email me. Good Luck in your search! Ann

[Patti UT]

RED,

  As much as you want to get this over with and put it behind you, "make a decision and get on with life", PLEASE try to be patient and take your time in getting ALL the information you can so you can make the BEST decision. The tumor grows slow so you have some time to do the research. Keep asking qusetions

Patti UT

[Obita]

Red:

Best of luck to you on this unusual journey.

I would have done radiation but couldn't take a chance because my tumor was just touching the brainstem.

I found surgeons that had done over 500 AN's and now, two and a half years later they are over 800. 

Shop 'till you drop!!

Kathy