Surgeons

[clere]

I have been recently diagnosed with an acoustic neuroma, about 6mm in size.  I am trying to decide whether to do surgery or a form of radiation.  Does anyone have experience/information about surgeons at Mayo Clinic in Rochester, MN or the University of MN hospital?

[kmr1969]

Hey clere,

Sorry, I don't have any experience with MN doctors, but just wanted to wish you well with your decision making process.

Your tumor is very small and unless it is causing you problems, watch and wait may be a viable option for you.

Regardless, you have time on your side to do your research, meet with several doctors, and make the best decision for you.

Best wishes,

Ken

[Cheryl R]

Clere,  Your tumor is small and you have plenty of time to choose  treatment.     I am in Iowa and I can say that if one is thinking of mid fossa to save hearing then Univ of Iowa and Dr Bruce Gantz does more mid fossa than Mayo's.
Dr Gantz does 70 plus ANs a year (mid fossa and trans lab)    I do know there has been people on here who have went to both Mayo and Univ of M.     Do not rush into treatment as you may have a harder recovery due to the small size and the brain not compensating on what it may be doing on the balance nerve yet.         
   I wish you well and there is life after AN treatment!                          Cheryl R

[Sheila1977]

Clere,
I just wanted to add to the good advice: the tumor is small and there is no need to rush a decision.  Like others, I recommend you do your research before making the best decision for you and talk to doctors from different perspectives that are experienced in treating ANs.  If your situation follows norm, the tumor may stay that size for a long time or forever.  On the other hand, on occasion, there are instances (like mine) where there is growth in the time between the first and follow up MRI.  I think those are really few and far between, but your research will provide better insight and information.  There is much comfort in this forum which I hope you will take.  Sending prayers your way.
s

[nftwoed]

Hi;

   "Does anyone have experience/information about surgeons at Mayo Clinic in Rochester' , as per Cheryl's post, I go to Mayo, Rochester and can't believe their ENT Dept. rated 2nd in US News and World Reports. What a run around of ultra conservatism and lack of pt/Dr. communication!
   Some here can likely report good outcome with the Driscoll/Link team, BUT, if I want any work done and Dr. Gantz at U of IA is still young enough, I'll be going to Iowa City. He has 3xs the experience of Mayo's "Dream Team".
   If I have questions re, a potential CI, I have to email Dr. Brackmann at House. He's not even my Dr! Niparko at Hopkins will reply also.
   Gee; This Mayo business is getting tiring after 13 years, but Iowa City is a long way for me.
   Sorry, I know nothing about U of M.

[clere]

Thank everyone for your replies.  I should have included more information.  The tumor is growing, it has about doubled in size over the last 5 years.  But I am worried that we don't know how long it has been growing; has it been growing slowly over the last 5 years or has it been quickly growing for a shorter time.  I have not had hearing in that ear for at least 5 years. I had an MRI in my hometown in 2008 and drs. did not see anything. This summer I went to Mayo to see if there was anything that could be done for my hearing. Took my old MRI with me and ENT at Mayo said there was a tumor about 3mm in my cochlea.  Did another MRI at Mayo and it has about doubled in size.  I am leaning towards surgery as I think I would feel better if I knew it was totally gone.
Why might recovery be worse with a small tumor, as Cheryl R. suggested? 
Nftwoed...you obviously have had a bad experience at Mayo, what happened?
Thank you so much for the info.

[nftwoed]

Hi;

   "Nftwoed...you obviously have had a bad experience at Mayo, what happened?" < My history with NF-2 is very long and detailed, clere.
   I believe you'll do fine with a single AN at Mayo if you have Drs. Driscoll ( truly, a very nice personality and filled with surgical patience ), and Dr. Link, ( Nice, but very, 'matter of fact', neurosurgeon ).
   So; They will remove your cochlea? Has the AN extended outside the cochlea? Small area. Intracanicular tumors are not a piece of cake, whatever the approach. I gather mid fossa for you?
   If they can save the cochlea, a local audiologist told me they are about 5 years away of being able to regrow cochlear ciliary. It's already been done in mice. Are you i any way related to a mouse named Cochlear Ciliary? Kidding ...
   But, all considered, Mayo is ultraconservative and do not collaborate with University teaching hospitals, to my knowledge. Thus, I prefer UIHC. A Mayo Aud even urged me to take my situation there.

[wiscyrunner]

Hi Clere, sorry that you're going through this.  I have nothing but good things to say about the team at Mayo as well as the staff at the hospital.  From my first visit I knew I was at the right place & had the utmost confidence in Dr. Link & Dr. Driscoll.  I had retrosigmoid surgery May 22 & am recovering quite well, back to running, tennis & biking.
They explained all my options, answered any questions, made me aware of the various risks involved.  While I'd rather not have had to deal with any of this, my experience was as positive as it could be given the circumstances.

Best of luck to you!   
     

[sandyinwisconsin]

I know there is a Dr. Haines and Dr. Levine at UW Minnesota. 

I was told that Dr. Levine is out on medical leave with an unknown date of return.

From what I read on this website, etc.  they look like great doctors who specialize in Middle Fossa.

Sandyinwisconsin

[SDTom]

Hi Clere,
I have had personal experience at Mayo and I think that is a good choice. That being said because you are dealing with a surgeon he may think that is best. I think Mayo is good but they may be a bit conservative in their actions. If you have the time and resources I would look into House also but if you are in the Midwest Mayo is a good choice.
Tom