Need help with a recommendation please!

[lindabrand]

Hi, I am newly diagnosed with AN tumor is approx 2.2 dumb bell shaped on right side.   I am an American living in Switzerland and want to find the
best Dr I can to handle this tumor.  I had really bad experiences so far in Switzerland with my health care providers and am afraid that little
Switzerland with a population of 7M does not have a Dr with enough experience.  After being diagnosed with AN my ear Dr. ( 2ND visit in 5 years first time he did nothing) told me that this little town cannot handle such a rare condition I need to go to the 1 and only University hospital in Zurich that can handle this problem for treatment, he basically gave me my MRI CD and the letter form Radiologist from hospital in German and told me good luck.  I tried to call the Uni hospital in Zurich to get an appointment with a Dr that is suppose to put a team together to evaluate and treat me but was told I have to wait 2 month for an appointment.  No information in this country or the hospital on AN.  I am lost, scared and frantic.   I want a 2ND opinion from a good Dr. in the USA before I go to this appointment in Zurich in July to compare what they tell me.  A big concern is that they do not have enough experience with AN.  I am trying to get an appointment at John Hopkins because I heard its one of the best hospitals in USA but is it the best for AN tumors?  Does anyone have experience with JH? No one can really tell me anything.  My insurance might not pay in USA but I would rather be in dept and be alive and have a better quality of life.  I just feel safer coming back to USA for this operation but just do not know where to go.  How can I find out which Dr's and institutions have had the most experience and did the most operations or radiation treatments?  I totally do not know which treatment I want or need yet.  I am really really afraid of the surgery option but radiation sounds bad to me too long term.  But know I need something if I want to live, my symptoms are getting worse and i really do not feel good.  Any help or direction anyone can give me is MUCH appreciated.  Thank You. Linda

[sterry]

Hi Linda, I have felt like you. When you live in  Wyoming the choice was going elsewhere too! Send a copy of your MRI to House Ear Clinic in Los Angeles California , they read and consult for free.  In my opinion they are the best! I had my 3.7 cm AN removed there in October 2009. Wonderful results. Dr. Friedman is TOPS.  You can find a lot of House alumni on this forum.  Best of luck.
Susie

[CHD63]

Hi Linda and welcome to this forum .....

So glad you found us.  This is a wonderful source of information and support.  Be sure to check out all of the links on the ANAUSA home page.

Have to agree with Susie.  Send your MRI CD to Dr. Rick Friedman in care of House Clinic.  See:  http://www.houseearclinic.com/consultation/acousticneuroma

Many thoughts and prayers.  Keep in touch.

Clarice

[JerseyGirl2]

I totally agree with Clarice and Susie, the two previous posters. House is a very popular destination for international AN patients -- not to say that other skilled AN surgeons in the U.S. don't treat international patients  -- but I'm betting that House has the drill down with the various intricacies involved with traveling for surgery as well, if not better, than most. I only traveled cross-country to House (from New Jersey), rather than across the ocean, but would do it again in a heartbeat.

Catherine (JerseyGirl 2)

[lindabrand]

Thank you to all that responed, really appreciate your advise.  I just researched something that really sounds like the best option so far.  Does anyone have information or personally heard of UPMC ( Univ. Pittsburgh Medical Center) EEA Endoscopic Endonasal Approach minimally Invasive Brain Surgery?
I have  just read they can remove Trigeminal Schwannoma tumors via nasal sinus passage. No incisions to heal, Faster recovery time, Fewer side effects, reduced risk of neurologic damage.  This really sounds good to me.  Anyone have experience with this?? Thank You!

[LizAN]

Thank you to all that responed, really appreciate your advise.  I just researched something that really sounds like the best option so far.  Does anyone have information or personally heard of UPMC ( Univ. Pittsburgh Medical Center) EEA Endoscopic Endonasal Approach minimally Invasive Brain Surgery?
I have  just read they can remove Trigeminal Schwannoma tumors via nasal sinus passage. No incisions to heal, Faster recovery time, Fewer side effects, reduced risk of neurologic damage.  This really sounds good to me.  Anyone have experience with this?? Thank You!

Where did you see that on their web site?  I was just on their site yesterday and it did not look like acoustic neuromas could be removed via the endonasal approach.  It sure is an appealing idea.

The five year old son of one of my partner's co-workers is at UPMC right now.  He will be having a different type of tumor (craniopharyngioma) removed via the endonasal approach on Monday.

Liz

[lrobie]

I had been going to UPMC since my diagnosis in 2009.  They never recommended the approach you mentioned for ANs.  I believe it is used for other types of tumors, not ANs.  It's too risky with all the nerves that they need to work around.  I am scheduled for surgery at House on July 18th.  I'm traveling across country from Erie, Pennsylvania.  UPMC wanted to do translab and I wanted mid-fossa.  I believe House has much more experience with mid-fossa surgery than my surgeons at UPMC.  Don't get me wrong, they were very good to me.

Lisa

[mk]

Hi,

sorry for your diagnosis. It must feel very scary right now, but you will find a lot of help and support here. You are right that possibly in a small country like Switzerland there may not be a lot of expertise. Being in Europe, you should definitely approach and consult with the Hanover Institute in Germany. They are the best in Europe, they have a renown centre and people from all over Europe travel there. There is another well known and experienced centre in Italy, but I don't remember where right now. I can find out for you if you are interested. But I would certainly contact the Hanover institute first. I also suppose that the insurance situation might be more favourable if you stay withing Europe.

Marianna

[lindabrand]

After my research I found that they do treat AU with EEA at UPMC.  I am waiting an appointment just sent my MRI last week. 
From what I read you have less risk with nerves.  Check this out.  I will le everyone know once I find out more.  I am definately checking out
this option if it works for my case.  Otherwise thank you for the House info, I will send my MRI to them and see what they say too.
http://brainsurgery.upmc.com/conditions-and-treatments/acoustic-neuroma.aspx?backUrl=%2fconditions-and-treatments%2findex

[lindabrand]

Thank You Marianna.  Yes it would be better for the insurance if i stayed in Europe.  Do not think they will pay in the USA :-(
I will check out this Hanover Institute in Germany.  And yes if its not too much trouble the one in Italy would even be closer.
Thank you so much!

[lrobie]

If you are seriously considering EEA, I would make sure that they do indeed treat Acoustic Neuromas using that procedure.  I don't believe the link you sent is specific to ANs. 

Lisa

[LizAN]

After my research I found that they do treat AU with EEA at UPMC.  I am waiting an appointment just sent my MRI last week. 
From what I read you have less risk with nerves.  Check this out.  I will le everyone know once I find out more.  I am definately checking out
this option if it works for my case.  Otherwise thank you for the House info, I will send my MRI to them and see what they say too.
http://brainsurgery.upmc.com/conditions-and-treatments/acoustic-neuroma.aspx?backUrl=%2fconditions-and-treatments%2findex

If  you go to that site and click on the Treatment tab, you will see this statement:

"The surgical approach depends on the size and location of the tumor, and includes the retrosigmoid, translabyrinth and middle fossa approach"

I don't see any mention of the endonasal approach.  Please keep us posted.  My little friend had his surgery at UPMC today.  I'm waiting to hear about his neurological status, post-op.

Liz

[lindabrand]

Hi Liz, they do definately treat AN with EEA approach.  I have an appointment on the 19.Jun with Dr. Gardner he specializes in this.  Look at these. Click on the video on the right side for the first one.
http://brainsurgery.upmc.com/meet-the-surgeons/surgeon-profiles/paul-gardner.aspx#
http://brainsurgery.upmc.com/conditions-and-treatments/acoustic-neuroma.aspx?backUrl=%2fconditions-and-treatments%2findex.aspx

I will talk with him on next Tuesday and give you a report. 
Linda

[lindabrand]

Hi Lisa, which surgeons did you see at UPMC? ? From what I read its less risky with the nerves with EEA approach.  I will for sure get the full information next week and let you know.  Thanks Linda

[LizAN]

Hi Liz, they do definately treat AN with EEA approach.  I have an appointment on the 19.Jun with Dr. Gardner he specializes in this.  Look at these. Click on the video on the right side for the first one.
http://brainsurgery.upmc.com/meet-the-surgeons/surgeon-profiles/paul-gardner.aspx#
http://brainsurgery.upmc.com/conditions-and-treatments/acoustic-neuroma.aspx?backUrl=%2fconditions-and-treatments%2findex.aspx

I will talk with him on next Tuesday and give you a report. 
Linda

I'm afraid I'm not seeing anything on those links to indicate they do the minimally invasive approach with ANs.  I hope they do.  Did they tell you that they do it?  I watched the video of Dr. Gardner, but he didn't mention ANs.