Info re: Mayo Clinic, MN or University of Michigan

[Anomar11]

Hi,
I was just diagnosed yesterday with a 2 cm AN in left ear.  Two months of ear fullness, hearing loss, burning ear/throat.  After hearing test this past Mon, the ENT MD said he could almost assure me it wasn't a tumor, but hearing so bad, the standard of care was to rule it out with MRI.  I was still anxious to get results before long holiday weekend, but was totally blown away by the diagnosis.  I know you all have been there.  I am very grateful to have found this forum.  I've done some reading, and you seem like a great, caring group of people.  This whole thing is still surreal to me.  I could reiterate all emotions posted by others newly diagnosed. I also know it could be much, much worse.  I'm now trying to figure out where to go.  I live in Upper Michigan, so anywhere will be a long drive.  I'm very impressed with what I've read about the Michigan Ear Institute.   Has anyone had experience with Mayo clinic in MN or University of MI as these were also recommended.  I'd also be open to other places in MI. or Wisconsin.  I'm 51 mom of 21 yr. old daughter and stepsons 21 and 25.  My husband is a great supportive person.  Thanks in advance for any advice.  This is a wonderful resource.

[Nicole222]

Hi and welcome.   We all know the fear and anxiety you are feeling.  I'm Nicole and I just went through a whirwind AN experience.  From diagnosis to surgery was a 3 week process for me.  I also had a 2+cm AN on the left side.  I lost some hearing in 12/06 and neglected to get an MRI b/c I was nursing my son.  Time went on and I just kind of let it go figuring there was no way it was a tumor or MS.  14 months went by and then came the facial numbness, dizziness, headaches, and an over all foggy or dumb feeling. I was self-diagnosing along the way attributing things to low blood sugar and anxiety--none of which applied.   Then, one day I got so dizzy, I fell over.  I was home alone with my 21 month old.  That scared me enough to immediately see my reg doc and alsoschedule my MRI asap.  I had the MRI and there it was--plain as day.  I was in shock.  I have no experience with either of the places you mentioned as I am in Florida.  But, I'm sure you'll make the best decision for you.  I just had my surgery (retrosigmoid) on 5/9/2008 and am recovering remarkably well.  I did lose the hearing on the left side as well as the balance nerve, but my facial nerve was preserved.  I don't even really have any balance issues now b/c they think the nerve was being damaged for so long that I was already compensating fot the loss of it.  Anyway,I (we) know how overwhelming this is--even though it could be worse--it is still very serious and you are valid in being scared.  Please ask any questions you may have--the people here are beyond wonderful and very supportive.  I'll be praying for you.

[lacey7]

Hi Anomar,
I'm also from Michigan, and have had quite a bit of experience with U of M, for the Rheumatology Dept.
I personally feel the the Michigan Ear Institute is the BEST.  It's in Farmington Hills, MI., so still the lower part of Michigan.  You could call information and get the phone number.
This is all they do there, and they have the best surgeons.  Everyone is so nice.  I was diagnosed April 15th, and am supposed to have surgery June 26th., with Dr. LaRoure.
You can look up on the internet, Michigan Ear Institute.com.   Read up about it.  Since April, I've done alot of research.  This is the place I'm choosing to go.
This is their ONLY speciality.  U of M is a teaching hospital and specializes in everything.  
The other doctor who is excellent at Michigan Ear is Dr. Kartush.  I think I spelled those 2 names right.  The doctor I originally saw at Michigan Ear was Dr. Babu, but I thought his experience wasn't as long as the other doctors, so I switched.  
You can also look up the subject here called "anyone from Michigan" and read those posts.  Everyone seems to swear by this place.
I wish you the best, and I know how you feel.  It was a shock for me, also.  I had never heard of this before.  
Also, just to let you know, I've had alot of surgeries done at Cleveland Clinic, and I thought about going there, before I found this place.
But, I feel very comfortable where I'm at.
I hope I've helped you, and God Bless.
Feel free to post with any questions......this is an excellent group here.
Lacey

[sgerrard]

Hi and welcome to the forum.

Here is a link to the topic Lacey mentioned: http://anausa.org/forum/index.php?topic=6094.0

If you have any questions about using the forum, please feel free to ask. You are already getting some good information here, and there are lots of other topics, and plenty of supportive people, to help you with any questions you might have about surgery, recovery, and so on.

We also do a quite a bit of plain old chatting.

Steve

[Anomar11]

Thanks Nicole, Lacey and Steve for your kind replies and welcome.  Nicole, I'm glad for you for your good recovery.  I'll be glad when I'm on your side of the fence.  Your prayers are much appreciated.   When you lose your balance nerve does your other ear/brain just learn how to compensate.  I'm prone to motion sickness and dread the dizziness/nausea potential.   Lacey, your information was helpful.  I will be following your progress and keeping you in my prayers.  I am leaning strongly to just calling MI Ear Inst. next week.  Cleveland Clinic would be a good option except for the fact that it's about another 4 hrs (12 total) drive.  I have nephews in Detroit and Cleveland, so having family in the vacinity would be a plus.  Might you know of a surgeon at Cleveland or have a contact of someone who might know who specializes in AN's?  Do all the MD's at MEI favor one type of operation, the one that cuts the hearing nerve?  When reading testimonials on their Web site, this is all that's referenced.  Also, these testimonials are several years old.   Anyway, thanks again.  It's so wonderful communicating with others who have been there/are there.   
 
Mona

[Nicole222]

Mona,
Yes, when the balance nerve is damaged or lost, the brain does have the ability to compensate.  Though, mine went more quickly than most, not sure why.  At first, it was ROUGH.  i never vomited, but the nausea and dizziness were enough to make me shut down.  I didn't want to open my eyes--or do anything.  I was told by my neurosurgeon and physical therapist that the sooner you open your eyes and put one foot in fron of the other, the sooner your brain will re train itself and the nasty symptoms go away more quickly.  They encouraged me to sit in a chair, rather than the bed and to walk the halls (with a walker) when I could.  I refrused many times.  i joked on another post here that I would kind of "play dead" until my physical therapist would just leave .  I was not going to make myself sick and I figured I would do it on my time, and I did   They do give you anti-nausea meds round the clock and you're so out of it that it's not at the top of the list of concerns.   If you need more time to just lay there, then do .  I'm not trying to scare you by any means. Being nauseated is a horrible feeling, but with the meds and going at your own pace--it is really ok.  Mine resolved within about 6 days.

[Mama R]

Melissa, aka Daydreamer, just had surgery done by Dr. Kartush from Michigan Ear institute. Hopefully she will be able to give you some insight. I did not find anyone at Cleve Clinic that impressed me (suprisingly) but then I wanted someone that did a lot of these surgeries. I ended up in Cincinnati & very grateful for the team that did my surgery but I suspect you will can find someone closer.
It has been 9 weeks and yes the other side learns to compensate for the balanace nerve being cut. I can attest to that as mine has gradually gotten better..not totally there yet though. I know of 3 diff methods of surgery, translab, retrosigmoid & middle fossia. I had translab and the nerve was cut. I don't know about the other 2 methods.
Good Luck on researching doctors. I did my footwork and have no regrets. Once I was scheduled it wasn't long until I just couldn't wait to get it over with.
 

[lacey7]

Hi Mona,
I know that all the people wrote in on the Mi. Ear Inst. site where all from the same doctor...Dr. Kartush.  There are a total of 6 surgerons......and they all think differently.
I think he asked his patients to write on the web site about their surgery.  I don't think any other doctor did that.
But, they are all different people, and surgeons.
Maybe I forgot to say, when I was telling you about Cleveland Clinic, that they are excellent at doing certain things.  I did check in about AN, but never went to the surgeon there.
I have heard from so many people, that #1 place in the U.S. is in California...#2 place is Michigan Ear.  My doctors at Cleveland were in the "Bowel "/Intenestional area.  WRONG PLACE.
LOL.  I'm so happy with this place, and since you said you have relatives from Detroit, this is very close.  The Ear Institute is between 11 mile and 12 mile road, off of Inkster.
The hospital is called St. John Providence Hospital, and a few miles away.  So Detroit sounds like a good location.  Up to you, of course.
I would say to make an appt. with one, and go and see if you like him.....just not Dr. Babu!!!  (young).  I think you will.
Thanks for the prayers.......my surgery is .about 4 weeks away.  Finally.  I made the surgery appt. the end of april, so I had to wait 2 months.  The time goes slow!!!
God bless you, and I'll be following your plans, also.  You will know when you find the right doctor.  It will take a few more weeks, but you will feel better in the long run.  It's really important for the doctors to do the MOST AN surgeries.  Doctors at Cleveland Clinic and U of M, do not do them everyday, or week. 
God bless you, and I'll follow your progress also.
Lacey

[leapyrtwins]

Hi Mona -

I live in Illinois and had my AN surgically treated by a doc at the Ear Institute of Chicago, but I have heard excellent things about the docs at the University of Michigan and know a forum member who recently consulted with them.  They have a lot of experience and a good reputation. 

Michigan Ear Institute also has a very good reputation and as someone mentioned they are rumored to be #2 among places to have an AN treated.

As for surgical approach, I don't know if the docs @ MEI have a preference but wth a tumor your size, you could choose retrosigmoid instead of translab.  Translab results in automatic SSD (single sided deafness) but retrosigmoid would give the docs a chance of saving the remaining hearing you have in your AN ear.  There is no guarantee that they can do this with retrosigmoid, but some patients like to have the chance.  Some AN patients will tell you that retrosigmoid results in a higher incidence of facial nerve damage, but that's not always true.  I had retrosigmoid and have no facial nerve damage.  It's important to note that with all things AN, results may vary 

I don't see any mention in your post of radiation.  With a 2 cm AN, it should be a treatment option for you.  Have you looked into Gamma Knife or Cyber Knife?  I'm not saying that having surgery is a wrong choice (I had it myself) but your should look into all your options before deciding on what treatment you want to have.

If you haven't already, you should contact the ANA for their informational brochures.  They are very helpful and will explain all your options to you.

Good luck on your AN journey,

Jan

[Anomar11]

Thanks again for all replies.  Mama R. - good luck on your continued progress.  You'll be in my prayers.

Jan, I've been following many of your replies.  I looked up Chicago Ear Institute and your doc as well.  Chigago is only about 7 hrs away.  This is now day 2 post diagnosis.  I'm trying to calm down, get some perspective and realize I do have some time.  My husband and I are studying up about all the different radiation options.  I will definitely get the literature from ANA.  Again, thanks.  I'm sure I'll be back with questions.

Mona

[leapyrtwins]

Mona -

you are so right; you do have time to figure out what you want to do.  Remember that your treatment choice is a personal decision and you should pick what is best for you.  Do your research, talk to doctors and other AN patients, and then decide.  Don't rush into anything.

Jan 

[Jeanlea]

Mona,

Welcome to the sight.  This is an amazing place to gather information and support.  I am also from the Upper Penninsula.  I had my surgery done in Milwaukee.  My tumor was too large to be able to consider any type of radiation.  My doctors in Milwaukee did both.  Hope that you are able to relax soon. 

Jean

[Yvette]

Hi Mona, welcome to the club! I know it is very surreal and scary at the same time, but just keep reminding yourself that you have something they can fix! You're going to be okay. Soon you'll be on the other side of the fence, with us, as a postie. (post op)

My AN was 3cm, and I had the translab procedure with the most fabulous brain surgeon in the world (I think) at the famous Mayo Clinic in Rochester, MN. Dr. Link is the AN specialist for Mayo, and he is great (brillant, funny...I could go on). In choosing between the regismoid and translab, my doc and his team said that with a translab, they can see the tumor and my facial nerves very well, and thus can avoid the facial nerve much easier than with the other procedure. But every surgeon probably has a different preference and specialty. You need to choose what is best for you and your doc. My tumor was large enough that the balance center had already long since been destroyed, and the other side of my brain had for a long time been moving function over to the other side. As a result, I had no dizzyness or nausea etc.

Now, except for SSD and a few slightly annoying leftover symptoms, I am doing great. Life is wonderful:-)

Best wishes, keep us posted, I'll pray for you too,
Yvette

[Anomar11]

Yvette, 
Thanks so much.  I've been doing more homework and am seriously considering Mayo Clinic.  I have seen Dr. Links reference and will contact him if I go there.  Thanks for your prayers also . 

Jean,

I did receive your private e-mail.  I tried to do the private response to my email, but didn't know what I was doing.  Will keep trying.  I'd love to correspond.   I'm so happy to hear from another person from this neck of the woods.

[Anomar11]

Yvette,

Is Dr. Link the right one if I'm considering radiosurgery?