Anyone have experience with Mayo Clinic, MN?

[firewalker]

I've been recently diagnosed with a medium-sized (3.3cm) AN in my right ear. After boning up (i.e. going to Acoustic Neuroma College) on what the heck these out-of-control things are and what my options are, I consulted with surgeons at Froedert Medical College in Milwaukee and with Dr Michael Link and Dr. Colin Driscoll of the Mayo Clinic in Rochester, MN. I live in the southeastern part of WI (Milwaukee-Chicago) area and found little experience at Froedert Medical College in Milw (they don't even do the translab approach). The Mayo surgeons I consulted with have a surgical team experience with 250 ANs. I'm currently investigating surgeons and their experience for my area and understand that the Chicago Ear Institute would be another great place to investigate thanks to Jan in IL!

My options are radiosurgery or the translab approach which is what I'm leaning toward due to my current hearing loss in that ear (10% word recognition). I'm guessing I've had this for about 18 years because that's when I started reporting vertigo, headaches and hearing loss.  I'm of course very scared of the surgery (big ouch!!!) and plan on having it toward the end of Jan because my son is getting married in JAMAICA the beginning of Jan!

Does anyone have experience with either the Mayo Clinic in MN and/or surgeons Michael Link and Colin Driscoll regarding their AN? I definately felt taken of care with them and they provided me with a lot of info regarding ANs and the ANA. I'm planning on getting a free consult with House Clinic as well which I'm sure will confirm what I've already been told. Does House or Brackmann still consult and do procedures?

GREAT BIG SMILE for this forum and for ANA as a resource!
~Firewalker

[Obita]

Hi firewalker:

Welcome!  Yvette had translab surgery at Mayo Clinic in January.  I know she will write back if you send her a note.

I had translab at the University of Minnesota in Minneapolis.  Dr. Sam Levine had done over 500 surgeries at the time I had mine.  I heard from someone that he is over 800 now.

Good luck to you, Kathy

[firewalker]

Hi Obita,

Wow! That's experience. Did you have any complications from your translab? Also, I'm not sure how to contact individual persons on this forum. Can you tell me how to send a note to Yvette? Yvette who?

Greatly appreciative of your response,
~Firewalker

[OTO]

firewalker

Drs House and Brackmann are still active at the House Clinic.  Do an google search on House Clinic.  When you get to the website, look for the tab (button) on Phone Consultations.  It will give you an address to send your MRI films too.   I don't know exactly how the clinic assigns the different doctors to review MRIs.   In my case, I specifically asked for Dr Slattery, because my local ENT recommended him.   

To get an email to Yvette, somewhere on the forum page is a members registry.   I can't find it.  What you can do is look in the search tool, type in Yvette.   It should come up with messages by Yvette.   You then click on her name.  It should send you to her profile, and give you a link to send her a personal message.   

[Obita]

Sorry firewalker.......I should have told you how to contact her or anyone else on the forum.

On the bottom of the forum homepage, if you are logged in, click on the Total Members link.  That will take you to a alpha listing of all members.  Click on her username:  Yvette.  That brings up her info so you can read her posts or send her a personal message.  'Tis easy!!

My surgeons are very experienced.  Sam Levine is the Neurotologist/Otologist and Stephen Haines is the neurosurgeon.  They have worked together as a team for years. 

I am one of the very lucky ones.  The only complication I had was the dry eye from my eye not closing all the way.  That happened about day 10 post op and was closing completely on its own between two and three months out.  That was it.  I never had a headache but I did have muscle spasms right after surgery that were well taken care of with valium.  My surgery was at 7 am on a Thursday and I was walking to the parking ramp at 11 am Sunday.

Good luck firewalker.  If you have any questions, send me a note!  Kathy 

[Yvette]

Hey Firewalker, this is Yvette. I had the best experience at Mayo with Link and Driscoll, I sent you a message, so check your box! I'd be happy to chat with you! Dr.Link, Mayo's AN specialist (he averages 40 ANs a year), is a brillant doctor. Besides, he's funny, upbeat, has such a caring demeaner, one of those people who seem to be always smiling and happy/confident. I'm a history buff, so he'd spend time on his rounds with me discussing the history of surgery, how they only had ether back then and doctors were judged by their speed-whereas now a 10 hour surgery is common. The Mayo team made me feel like I was a celebrity with my own private team of doctors. Well, let's talk more later! Yvette

[suelay]

I likewise had a great experience with Drs. Link and Driscoll and highly recommend them.  I also really liked Mayo, its set up, cleanliness, residents, etc.  My parents who are in there late 70s came for my surgery and the ease of getting to the hospital, hotels, and restaurants was nice for them as well.  I sent you a personal reply too, but I'm lousy at this stuff so if you didn't get it, let me know. 

[gordy]

firewalkewr are you sure fredort doesnt do them? thats where i went for mine. i cvhoose gamma knife but there are 2 thast i know of foe sure thaty do them there. phillip wackym and friedman.

[firewalker]

Thanks everyone for your responses! I consulted with Dr Backmann at House Clinic last week and was told my tumor was 2.8cm. So strange, I've been told three different tumor sizes so far by different surgeons. Will stick with the expertise of Dr Brackmann for he seems to have the most experience. To date, he told me he's done 3,000 translabs @ 150/yr and was Dr House's protege. He informed me that Dr House retired quite some time ago and that I would have to settle for second best, meaning him. I was very embarrassed that I had personally requested Dr House but extremely satisfied that Dr Brackmann consulted me. Very down to earth kinda guy. I'm sold on him but am concerned about the distance between Milw and Los Angeles, financially and psychologically. He gave me the best odds against facial weakness-who wouldn't want him?

Still not sure who I'm going with but will also check out Drs Wackym and Friedland at Froedtert in Milw. My experience is that they'll lean toward radiosurgery like Dr Sinson did in my case (he made that decision without even requesting a current audiogram!). I'm not interested in radiosurgery and want this thing gone for good!

Most grateful for your support,
~Firewalker

[leapyrtwins]

Firewalker -

I work for a national association of nurses, and our Executive Director just told me this morning that he met a physician at a meeting this weekend who had been diagnosed with an AN.  He told me that the physician was going to Mayo this week for AN surgery.  From what he said, Mayo has a very good reputation in the medical community when it comes to treating ANs.  I know this is "secondhand" knowledge, but thought I'd pass it on.

That said, I still encourage you to look into Chicago Ear if you haven't already.  It doesn't hurt to get several opinions and Hinsdale would be closer to you than Mayo or House.

Good luck and keep us posted,

Jan
 

[firewalker]

Thanks Jan! I love hearing great things about the surgeons I'm considering. I'm feeling very taken care of between them and this forum! Will let you know if I consult Chicago Ear Institute. Like you said, they've got a great reputation.

Be well,
~Firewalker

[kristin]

Firewalker,

I was about to make my appointment to Mayo in Rochester when I consulted with a specialist here in Kalispell and one in Missoula that both referred me to Dr. Brackmann by name. They said he was the best of the best. Mayo made way more sense geographical as my grandparents and aunts and uncles live within 45 miles of Rochester. But it's a plane ride regardless and I figured I might as well go LA and have the best surgeon operate on my brain. While I was there, there were 3 other AN patients on the Medical Floor. One was from Oklahoma, one was from Chile and another from somewhere I can't remember, and I am from Montana. I know that it's worth the trip! Just thought I'd through that into the soup.

Kristin in Montana