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Author Topic: If you could travel anywhere....who's the best?  (Read 5781 times)

spgreenfield

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If you could travel anywhere....who's the best?
« on: November 04, 2011, 11:00:18 am »
I was diagnosed mid October with 2.3x2.9x2.3 AN.  Since then my balance has gotten worse and numbness is taking its toll (bit my tongue last night so hard it's bruised!) so I guess I'll chew only on the "good side" of my mouth for who knows how long?!?  My hearing is fine but worried about facial nerve damage.  Have my first appt. for consult with Mayo Clinic, but not afraid to fly elsewhere to a clinic that's excellent in outcomes.....any suggestions out there?  I'm 55, great health and not afraid of surgery.  I really want to feel normal again.  Strong symptoms have been present for only a few weeks now.  Worried about how much they will increase as time goes by.....

Pam
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Pam in South Dakota

MRI & DX on 10/17/11, 2.8 x 2.3 x 2.3 cm cystic & solid mass
Left suboccipital Surgery with Dr. Tew at Mayfield Clinic in Cincinnati on 1/10/12
SSD but no nerves cut in surgery. BAHA implant 8/2012
Facial weakness almost gone!
Acupuncture helping face
Tear duct plug on 4/4/12

Cindyswart

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Re: If you could travel anywhere....who's the best?
« Reply #1 on: November 04, 2011, 11:15:42 am »
Carolina Neuroscience Institute, Raleigh, NC-Tel 919-239-0264
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Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

CHD63

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Re: If you could travel anywhere....who's the best?
« Reply #2 on: November 04, 2011, 11:54:30 am »
Hi Pam .....

There are many good doctors around the country.  However, there are other factors involved ..... where you live, how big and/or complicated your tumor removal might be, etc.

I am not a doctor, but if you already have numbness in your tongue, it sounds like your tumor may already be pressing on your facial nerve.  If that is the case, you really want to go to the place with the most experience in tumor removal.  The doctors at House Ear Clinic in Los Angeles remove 5 to 10 acoustic neuromas each week and are well acquainted with the characteristics of acoustic neuromas.

In my case, I had a regrowth situation following a first retrosigmoid approach removal.  I knew there would be scar tissue to deal with so I chose to go to House where I felt in my situation I would have the best care possible because of their vast experience and high success rate.  It was a good choice for me.  I had excellent results and it was definitely worth flying nearly the length of the country for me to go there.

But, each person must make the decision that is best for him/her.  If you would like to PM me, I would be happy to give you more information.

Best wishes.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: If you could travel anywhere....who's the best?
« Reply #3 on: November 04, 2011, 12:24:00 pm »
 University of Iowa and neurotologist Dr Bruce Gantz.   He has been my surgeon for 10 yrs now due to having NF2.  I have had 3 tumors and 4  surgeries.         One was a CSF leak due to the use of a new colloidal implant that did not work well and caused  3 people to have a leak.    He does more mid fossa then Mayo does,if one is candidate for that one to preserve hearing.   Not everyone is.
                                                                     Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

JerseyGirl2

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Re: If you could travel anywhere....who's the best?
« Reply #4 on: November 04, 2011, 02:14:20 pm »
I had Acoustic Neuroma surgery (translab procedure) in January 2008 and will always be thankful that I traveled from New Jersey to House Ear Clinic in Los Angeles. I can say with absolute confidence that I will never second-guess nor regret that decision. That being said, there are many wonderful AN surgeons in the U.S., so it's best to do your research and select the surgeon and medical institution with whom you feel the most comfortable.

Best wishes as you reach your decision.

Catherine (JerseyGirl 2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

JAndrews

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Re: If you could travel anywhere....who's the best?
« Reply #5 on: November 04, 2011, 06:09:38 pm »
House Ear is the best. I went to Mayo also for a consult. I am very happy I chose House. I am fine.
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

ppearl214

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Re: If you could travel anywhere....who's the best?
« Reply #6 on: November 05, 2011, 04:44:11 am »
No one location is better over another. Yes, HEI does a majority of AN removals, yet..... here on the east coast, Boston has a medical mecca with Mass Gen Hospital/Mass Eye and Ear (MGH/MEEI)  as well as Brigham/Womans, Tufts Medical and Beth Israel Deaconess, as many on these forums can attest.

Clarice notes that many factors need to be taken into consideration:  location/size of tumor, does your insurance cover for you to travel out of state, experience of treating physicians, patient referrals (as you are gathering here), but a major key factor... if you travel for AN treatment, then travel back home, who will do your follow up care since you will not be near the surgeons?  That is a major factor as it is the post-surgical follow up that will be key.

No one place is better than another.... but please keep these factors in mind when determining a treating physician, regardless if surgical or radiation.

Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: If you could travel anywhere....who's the best?
« Reply #7 on: November 05, 2011, 08:21:26 am »
Phyl .....

I agree with you completely that there are many physicians around the country with excellent expertise in treating acoustic neuromas.  However, I feel like I need to address your strong concern about follow-up treatment if a patient travels for the initial AN treatment.

I have had three brain surgeries and traveled to different places/states for each of them ...... ranging from a 5 hour drive to a long flight across the country.  During the decision-making phase for each, I asked that very question ..... who will do my follow-up care when I return home?  In all three cases, I was assured that my local neurosurgeon would be able to handle most emergencies, but to contact them for advice depending on the reason for needing follow-up.  Thankfully, I have never had to explore that option ..... which is one of the big reasons I chose to go to experts ...... to lessen the chance of complications.  My follow-up MRIs are done locally and I mail the CDs to the doctors for their evaluation.

Just do not want people to choose their physician based on who is closest.  The follow-up can be handled.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

rvb755

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Re: If you could travel anywhere....who's the best?
« Reply #8 on: November 05, 2011, 08:52:01 am »
Pam, I flew from Michigan to Los Angeles to have my large tumor removed at House Ear Institute.  I have never regretted my decision and have had a great outcome.  The local doctor I saw is great but he told me they would have to take out the tumor in two separate surgeries a year apart.  He said for them to try to do it one surgery would take a 20 hour surgery.  Dr. Friedman and Dr. Schwartz removed 100% of my tumor in a 9 hour surgery with the facial nerve intact.  I couldn't be more pleased with the care I received.  My local doctor, Dr Daniels, was happy to do follow up with me after my surgery and will handle my follow up MRI's as well.

Rick
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3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

JerseyGirl2

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Re: If you could travel anywhere....who's the best?
« Reply #9 on: November 05, 2011, 12:02:59 pm »
Quote from: CHD63 on November 05, 2011, 08:21:26 am

Just do not want people to choose their physician based on who is closest.  The follow-up can be handled.


I totally agree with Clarice on this. I had a similar concern and got assurance from both my local otolaryngologist in NJ and my doctors at House that should there be necessary follow-up (and it turned out that none was necessary) communication would take place -- everyone was just a phone call or email message away.

Another "distance issue" for many people is the assumption that flying after surgery will be a nightmare. It isn't. The doctors won't release you until you're ready to travel -- usually around ten days or so post-surgery. Options include using a wheelchair at the airport, upgrading to first-class for additional comfort, arranging for a non-stop flight, etc.

Catherine (JerseyGirl 2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

james e

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Re: If you could travel anywhere....who's the best?
« Reply #10 on: November 08, 2011, 03:48:37 pm »
I will not address the docs...but you did get a lot of good info on this post. I will address "feeling normal". Probably as you have read already, everyones recovery is different. Some are slow to rebound, and some are fast. I am not aware of anyone who posts here who can say that they are back to "normal." We all have some level of disability due to the tumor regardless of how you get it treated, or even if you don't get it treated. ANs are bad news. Hopefully your recovery will take you back to "normal", but my advice to you is to adapt to your outcome, and enjoy your life.

I am retired and cannot ride my mountain bike...I run off the trail. I sold all of my wood working tools to keep all of my fingers since I am wonky 24/7. Not complaining! I have adapted my living style, have new hobbies, and I have a great life. The surgery will not resolve your problems...it will introduce new ones. I like to talk about kids that fall down, skin their knee and cry to Mom. My advice is to brush off the dirt, get up and keep playing. Adapt! You have a great life ahead!

James
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HeidiC

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Re: If you could travel anywhere....who's the best?
« Reply #11 on: November 08, 2011, 04:02:46 pm »
There is not a local Dr for me to choose from so I had a 2 hour drive home once I was released.  The drive home was torture, and I just wanted to be home...and this ride was in a luxury car.  Once I was home and laid in bed for a while I came out to lay on the couch and not riding in the car anymore I was fine.  I can't imagine going on a plane ride, having to sit up-at least in part, maybe having delays, flight canceled etc.  If I had a good local choice and had to do it again I would stay local.  This is obviously just my opinion, people travel all the time for this, just thought you'd like to hear another posters experience!

~Heidi
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Diagnosed 6-24-11 left side AN 3mm x 3mm
33 years old at time of diagnosis
Mid Fossia surgery 10-06-2011
with Drs Adunka and Ewend at UNC.

leapyrtwins

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Re: If you could travel anywhere....who's the best?
« Reply #12 on: November 12, 2011, 06:01:27 pm »
Depends on who you are and what is right for you.

Many people will tell you go to House Ear Institute in Los Angeles, and there's no doubt its a good place; but it's one of many good places.

I had my surgery in Illlinois (Chicago area), had a great outcome and have never regretted my choice of doctors.  In fact, I love my docs.  They did a great job for me and for everyone else I know.

I've said numerous times that I couldn't imagine getting on a plane post op, but many have and not regretted it.  It's all about personal choice.

Most Forumites here will make a case that their doc is tops; the decision is yours.

I have to say, although I respect Clarice, I personally know several Forumites who traveled to House for surgery, needed followup when they were back home, and their local doc didn't want to get involved.

Make sure you cover all your bases.

Also, check out the physicians/facilities on the ANA's main web page.  These aren't docs/facilities endorsed or recommended by the ANA (they don't do that), but the docs/facilities have passed a stringent set of rules that led the ANA to certify them as Centers of Excellence. 

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Archer

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Re: If you could travel anywhere....who's the best?
« Reply #13 on: November 13, 2011, 10:59:38 am »
New here but thought I might comment.  I had my AN removed at Mayo 9 years ago.  Dr. Link, neurosurgeon, and Dr. Driscoll, ENT, were my team.  I had gone to U of MN Hospital first but could get no response from them prior to going to Mayo.  I think Mayo is a great place to be and my Dr.s were I feel the best I could have asked for.  I am going there again now after another AN was discovered on a recent MRI.  So am now NF2.

Anyway, I have no reservations about returning to Mayo.  BUT, I am going to check out House for their consult by sending my MRI and history to them.  It can't hurt to hear or learn more.  Also going to check out the NIH Study to see what that is all about. 

I think mainly you need to be comfortable and confident in you Dr.s and facility.  Good luck and God bless.
« Last Edit: November 15, 2011, 03:44:24 pm by Archer »
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lori67

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Re: If you could travel anywhere....who's the best?
« Reply #14 on: November 15, 2011, 02:50:25 pm »
Heck, if I could travel anywhere for my surgery, I'd find a doctor with an office on a tropical, sandy beach!   ;D  Sure would make the recovery a whole lot more pleasant!

Hopefully you'll find the right doctor for you.  I was fortunate to have one pretty much in my back yard.  No sandy beach, but I did okay anyway!  I prefer to save up my traveling for non-medical reasons!   ;)

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.
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