Going a bit batty trying to make a decision

[MBrennan]

Recently diagnosed as well -- October 18th.  I consider myself  fairly savvy when it comes to navigating the health care system due to my background, but I'm struggling with 1) how many opinions to get 2) which option is best (surgery wise) and 3) should I travel for this.  I am in Ann Arbor, MI, we have a very good hospital/med center and I have met with the docs there that work extensively with AN's.  I feel comfortable with the doc I met with, he was knowledgable, kind and knows his stuff.  He spent over an hour with us answering all of our questions.  He even recommended places if we wanted to get a second opinion.  I feel good about UM but being in the health field I feel I should get a second opinion.  Any suggestions? 

Sincerely,
Completely bugging myself....

[CHD63]

Hi MBrennan and welcome to this forum .....

Many of us can attest to the fact that the decision-making process is one of the toughest part on this AN "journey."

If you have not already done so, you should send for the free ANA information to help you sort out the maze of information and validity of it all.  See:  http://www.anausa.org/index.php/contact-us

Beyond that, I would recommend getting several opinions to assist in your ultimate decision.  There are several outstanding medical facilities/physicians around the country who will give you complimentary evaluations, with no obligations attached, simply by sending a copy of your MRI CD and audiogram to them.  Depending upon the size and specific location of your AN, as well as the severity of your symptoms, you might want to get opinions from both surgical routes and radiation routes.  I know, for a fact that House Ear Institute in LA and UPMC in Pittsburgh will both give evaluations for either.

Eventually, you will know in your own heart and soul (gut, if you will) what is the right decision for you.

Tell us a bit more about your situation.

Thoughts and prayers.

Clarice

[Jim Scott]

MB ~

Welcome. 

It appears as if your local doctor/facility (UM) are going to be adequate but you can receive a free, no-obligation second opinion from the House Ear Institute (now named the House Research Institute) by sending them a CD of your MRI scan.  You'll receive a personal phone call from one of their AN physicians and e-mail access. 

House is renowned for it's AN surgery success but they are certainly not the only place in the U.S. that performs successful AN surgeries.  I had a very experienced neurosurgeon perform my AN 'de-bulking' surgery (4.5 cm tumor), enjoyed a rapid recovery and suffered no real complications.  Later (pre-planned) radiation treatment effectively destroyed the tumor's ability to reproduce and today, 5 years later, I'm doing great.  However, had I not been able to locate a neurosurgeon with vast experience removing ANs, I would have consulted with the doctors at the House Institute.  Because you should have all the information available to make an educated choice, I suggest you contact the House Institute in Los Angeles, California.  Please let us know what you decide.  Thanks.

Jim  

[Denise S]

Hi Molly
 This is Denise from Facebook.

I am glad you decided to come to the forum!   WELCOME!!!   You are really in one of the most 'brain racking' parts of this whole ordeal....trying to figure out what to do & where to go. 

Whatever you do, I recommend for sure keeping your appt. with Dr. Kartush at MEI so that you at least have the 2 best places in Michigans opinions.

Do you know what size your tumor is?   What kind of symptoms have you had?

Wishing you the best......OH and be sure to get those pamphlets of information Clarice mentioned...they are GREAT!

I will message you my number on FB in case you ever just need to chat or VENT to a fellow ANer (we usually understand more than most). 
PS, forgot to tell you...I'm from Ludington (right on Lake Michigan about up in the middle....beautiful here)

Denise

   

[MBrennan]

Thanks to all of you who have responded so quickly.  Apparently I am not saavy using spellcheck, because I re-read my post and noticed I spelled it incorrectly.  Anyway, I have sent away for the information, and have requested additional copies of my MRI and audiology reports and plan on sending them to House.  In addition, I will be getting another opinion from Michigan Ear Institute.  My tumor is medium sized, longest part is 20 mm.  My hearing tests come back as "normal" but I can tell I have loss in the right ear.  However, I can still hear pretty well which is what is making my decision difficult.  I have had very minimal vertigo, nothing debilitating.  The doc at U of M indicated I needed to have the surgery done in the next 6-8 months -- not a rush.  He also gave me names of other facilities and providers that he indicated are very good with AN's.  This impressed me as well.  I am 46, live in Ann Arbor, MI (Go Blue) and am a healthy person overall.  I am very nervous about facial paralysis, since I am a professor and spend a lot of time lecturing.   The trans surgical procedure is the best in order to not damage the facial nerve, which is very important to me. 

Thanks all -- you've been great, and responsive and helpful.  Keep the suggestions and information coming. 

-Molly

[Amplified2000]

First off I'd like to say "Go Blue!"

I was in a very similar situation as you, there are some top AN docs here in Chicago but I ended up sending my MRI to House and spoke with Dr. Friedman. I had very little hearing damage and not much in the way of symptoms.. in fact my AN was found by accident during an MRI of another tumor. The Dr's here in Chicago wanted to do Translab to minimize issues with the facial nerve.. but that would have meant a %100 chance of losing hearing in that ear. Dr. Friedman was ADAMANT that I not do it and that he could save my hearing using Mid-Fossa.. I rolled the dice and flew out to LA and had surgery with Friedman at House.. they did Mid-Fossa and I still have my hearing to this day.. plus no facial nerve issues whatsoever. Dr. Friedman is hands down the best Dr. I've ever met.. he still answers my calls to his cell, even if it is just to say hello, and he still remembers me 1 and 1/2 years later.

I obviously can't tell you what to do, only you can make that decision.. but I wanted you to know there are others who have been thru what you are going thru and we're still here to talk about it

[ppearl214]

Hi and welcome

Great suggestions noted thus far and there are some really fantastic AN treating facilities in the midwest to choose... some already noted here.  Over time, we also note to go with your gut.  Questions to consider...... as noted, obtain as many opinions as you can to help find a treating team that you feel, not only comfortable, but also have the AN treating experiences.  Will your insurance cover you to obtain treatment out of state (some do, some don't). Who will do the follow up, post-treatment (highy important question!)?

Your gut will never steer you wrong.  I recently found out that I didn't go with my gut on something (non-medical related) and listened to everyone else around me... and now, I'm paying a negative cost when I should have gone with my gut in the first place...... your gut will steer you.

Again, welcome.
Phyl

[leapyrtwins]

I had one of the top docs in Illinois and I had a great outcome.  I think one of the docs @ U of M interned with my doc here @ Northwestern University School of Medicine.

The docs @ Michigan Ear are very good.

Not really any reason for you to go to LA for treatment.

I stayed right in my own backyard and have never regretted it.  I was about your age (45 1/2) at the time of my surgery.

Jan