Help for an Iowa boy

[Itheus]

Hello!

I am a newbie to the forum, and must reiterate how thankful I am for this site.

I was diagnosed with a very small AN (about 2mm) last week.  Small but has wreaked havoc on my hearing and caused awful tinnitus!  I've seen the ENT and an Otologist here in Des Moines where I reside, and the Otologist wants to send me to a neurosurgeon.  I have been doing a little research on this site about physicians and places to go.  It sounds like the University of Iowa, specifically Dr. Gantz, has a great reputation.  However the Mayo Clinic in Rochester isn't that far away for me either.  I know ultimately this will be my decision, but if anyone can provide insight or recommendations as to which may be a more viable option, it would be much appreciated.  I am nervous but am trying to remain as positive as possible, while doing as much research as possible.

Thanks in advance!

[leapyrtwins]

My two cents worth, Dr. Gantz.

Jan

[Itheus]

Thanks Jan.

I've seen nothing but positive about him in my search.

[Cheryl R]

Hello and I am about 30 mi NW of you and you are free to ask me any questions about Iowa City you want.     I have had 4 surgeries at IC with Dr Gantz due to having NF2 and my last follow up from the last surgery 3 yrs ago was last week.     There has been several on here who have been to Iowa City and some from out of state.     I can give you a name of a in DM gal who had there besides me.    Your AN is small and you do have time to wait and watch for a while if desired as the hearing rarely comes back better and the tinnitus stays around.              I am an exception to the hearing improvement as mine did improve and am eternally grateful due to other side being deaf.                 I will pm you some more info.              Cheryl R

[chrisransom]

Hey there.  I am in the St Paul,MN  area and I went to Mayo for a consult.  Saw Dr's Driscoll and Link.  Both were knowledgeable and spent the time with me that I needed.  I am still in wathc and wait status and haen't been treated for anything but I wouldn;t hesitate to go there (but will probably end up at Univeristy of MN because they have a lot of experience with things and it's just more convenient for family, etc).

Browse this forum, learn as much as you can so you know what to ask and so you know what the docs are talking about.  My first consult was overwhelming - I had no real idea what they were saying to me.  After reading a few hundred posts, getting all the brochures form ANA, and doing a lot of searches on the internet my second consult (at Mayo) went much much better and I felt I made a more informed decisoin to watch and wait.

Good luck to you and welcome to  our little world!

Chris

[DanW]

I started another thread on a similar topic, selecting the right DR. for my 22year old daughter. We live in TwinCities MN.
This decision is a BIG one, researching and talking to DRs can make it easier. Don't make your choice just on easiest for family.
It is your life, you will live with the results.
We have been to Mayo and UofMN. Talked to HEI in LA and Dr. Gantz in Iowa City.
If surgical experience translates to expert surgeon then Dr. Gantz or HEI are the top of the heap.
At Mayo we liked the DRs but they won't tell you there numbers. Makes me suspicious of real experience.
UofMN isn't bad, probably 8-10 Middle Fossa/year. Levine and Haines seem to be good team.
But Dr Gantz is more like 30-40 MiddleFossa/year. (recomended by HEI, 2nd most AN surgeries in US)
HEI is double that # but more DRs. Probably the best in the US, maybe the world.

I am leaning toward recommending Dr. Gantz to my daughter, proximity and experience both.

Numbers translate to experience but does experience translate to results? Many on this forum say yes. You will have to decide that part for yourself.
I agree this is a great source of info and opinions. Read some of the Medical journals on the site for technical data to back up what you read here.
Whatever you decide make sure you can live with it, then own the decision and don't look back, and wish you would have done something else.
Your decision is what is best for you when you make the decision.
Good Luck
Dan

[Cheryl R]

Dan,   Good to hear that you have considered Iowa City.     When I asking Gantz the mid fossa questions,I said for someone from MN and he said he thought he had talked to you the day before as had the 22 yr old daughter.            I did not mention before but he has patients go to a local ENT if they want, to have the stitches out and not have to come back that soon.    There is then the little later post op appt.   
                         Good to hear from you and wish the best for your family,              Cheryl R

[JAndrews]

I consulted at Mayo with Dr. Driscoll and Dr. Link- they gave me one option- retrosigmoid approach..told me most likely I would have headaches (most likely severe) and they couldn't get all of the tumor out. No other approach into my brain was brought up. Also they do about 40 AN removals a year. Thank god I continued to research and went to House in LA with Brackmann and Schwartz..all tumor removed..no headaches, they do this surgery for a living:)

[nftwoed]

Hi;
   I'm in Iowa and have seen Gantz, Driscoll and Link at Mayo. Personally, due to limited experience as a practitioner, I would avoid Dr Carfrae at Iowa Ear Clinic.
  Gantz has probably 3 xs the experience the Mayo team has. Would say Gantz's bedside manner is not lovey dovey, but, he has the experience and skill. Mayo is where I go and they are ultra conservative. I think perhaps too much so sometimes. Nothing happens there re, studies, trials or research. Also, collaboration with other clinics.
  Your AN is small. It's within the margin of error for ANs by MRI.
  Im unsure if Gantz would want to remove it or not. I've read a couple rare cases where the ANs merely suctioned out due to their small size.

[Itheus]

Hi;
   I'm in Iowa and have seen Gantz, Driscoll and Link at Mayo. Personally, due to limited experience as a practitioner, I would avoid Dr Carfrae at Iowa Ear Clinic.
  Gantz has probably 3 xs the experience the Mayo team has. Would say Gantz's bedside manner is not lovey dovey, but, he has the experience and skill. Mayo is where I go and they are ultra conservative. I think perhaps too much so sometimes. Nothing happens there re, studies, trials or research. Also, collaboration with other clinics.
  Your AN is small. It's within the margin of error for ANs by MRI.
  Im unsure if Gantz would want to remove it or not. I've read a couple rare cases where the ANs merely suctioned out due to their small size.

Unfortunately I just checked my HMO and Dr. Gantz does not participate, nor does the Mayo Clinic.  In fact the gal said the only Dr. in Otology/Neurotology that participates is Dr. Carfrae.  I'm starting to get a little overwhelmed.   

[Cheryl R]

Then you appeal and appeal and appeal!      Talk to UIHC also.     I was not covered by my ins 10 yrs ago and appealed and was covered.             I know of a local young gal who whose ins said no and Carlton did hers in DM and she ended up with 4 surgeries.  A leak and infection was part of it all.       I found out about her surgery the day she was having her first one so was not able to pass on to appeal.       Even though some of her family knows me, she has not tried to contact me after I passed on to them that she could.
There is a chance if you see Gantz that he may want to watch your AN for some period of time.      Good luck with all this!
                                                                Cheryl R       

[Itheus]

Thanks Cheryl, I'm doing just that.

I spoke with Dr. Gantz through e-mail (he's already been incredibly helpful, and I'm not even a patient) and explained my situation.  He recommended I go to my ENT who is also an Iowa grad, Dr. Morgan.

I spoke Dr. Morgan today - he was really good, too.  He confirmed that Dr. Gantz is one of the best around, but by default they just sent me to the doctor that was on my plan.  He is going to work with my insurance company and, while he can't gaurantee anything, feels we have a good shot of having this covered.

[Cheryl R]

That's good news to hear!       By the way I did not give the dr  I was talking about in the previous post the right name.    It is Dr Carlstrom,neurosurgeon.          I hope this all goes well for you!                       Cheryl R

[nftwoed]

...and the end of the story?

[Itheus]

I have surgery scheduled with Dr. Gantz on July 21st.  I'm a bit nervous as expected, but feel that having him do my surgery is a victory in itself. 

Thank you all for your input.