Author Topic: Doctor and Insurrance sugestions! Please Advise!  (Read 3636 times)

Justin McNabb

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Doctor and Insurrance sugestions! Please Advise!
« on: April 19, 2012, 02:34:28 am »
Hi -   I'm new to the forum.  Just diagnosed a few weeks ago with a 2.9cm x 2.1 x 1.9cm AN on my right side.  I'm 31yrs old.  My only symptoms are tinnitus in both ears and a feeling of fullness in my right ear.  I am in a unique situation in that my diagnosis was while I was overseas and I have not been diagnosed in the US and therefore do not have any records of my diagnosis.  I have not seen a doctor yet, but am deciding now where I want to go.  My insurance is okay, but if i need to, I could change now based off of where I think the best medical team is.  I am on the west coast, but am willing to travel if I need to.  It sounds like Standford, UCSF, and the House Clinic are common places on the West Coast.  Are there others that I should look into, or are there other places in the US that are significantly better (ie.  Dr. Fukushima, Skull Base Institute, etc.)?  Any suggestions on insurances that better cover AN surgeries and treatments? 

Thanks you so much.  I am new to this, a bit scared, and feel too young to have a tumor this size and loose my hearing. 

pjb

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #1 on: April 19, 2012, 06:16:57 am »
Hi -   I'm new to the forum.  Just diagnosed a few weeks ago with a 2.9cm x 2.1 x 1.9cm AN on my right side.  I'm 31yrs old.  My only symptoms are tinnitus in both ears and a feeling of fullness in my right ear.  I am in a unique situation in that my diagnosis was while I was overseas and I have not been diagnosed in the US and therefore do not have any records of my diagnosis.  I have not seen a doctor yet, but am deciding now where I want to go.  My insurance is okay, but if i need to, I could change now based off of where I think the best medical team is.  I am on the west coast, but am willing to travel if I need to.  It sounds like Standford, UCSF, and the House Clinic are common places on the West Coast.  Are there others that I should look into, or are there other places in the US that are significantly better (ie.  Dr. Fukushima, Skull Base Institute, etc.)?  Any suggestions on insurances that better cover AN surgeries and treatments? 

Thanks you so much.  I am new to this, a bit scared, and feel too young to have a tumor this size and loose my hearing.

Sorry to hear about your AN only thing is to be thankful for it is benign and slow growing  seeing yours is a fairly larger size I would just double check with the insurance company I believe if you change some companies will not accept a preexisting condition... You have to remember this is a complex surgery and most insurance plans will go out of network and with a good strong letter from the doctors does help and most good surgeons will accept the insurance .

Good Luck and I heard and seen only great results at HEI.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

CHD63

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #2 on: April 19, 2012, 08:43:34 am »
Hi Jared and welcome to this forum .....

Shopping for different insurance after an AN diagnosis could be a problem.  Not sure what your situation is, but if you have current health insurance, in my mind, it would seem best not to try to change it until after your surgery.

If you are going for surgery and you live on the West Coast, House Ear Clinic has an outstanding reputation.  If you choose radiation treatment, Stanford has an outstanding reputation.  If I were you, I would send my diagnosing MRI to both places for a free evaluation.

BTW, Dr. Fukushima did my first AN surgery (he is excellent) and Drs. Friedman/Schwartz did my second AN surgery at House (they are fantastic).

Let us know more about your situation.

Clarice
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

leeclinton

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #3 on: April 19, 2012, 03:21:51 pm »
Jared,
I don't have any Dr or Insurance advice for you.  But in reading you post I did notice some similarities between us.  I had my AN removed in January 2012 at age 33.  Mine was large as well at 3.3cm. 

My only offereing here is words of encouragement.  I underwent the surgery and was back to work in less than 3 weeks.  I did loose hearing my affected ear, but I expected to.  Truthfully, it is not that bad.  I also had some facial weakness that has resolved to the point that only I am aware of it (others cannot tell).  I am back to lifting weights, jogging, and even taekwondo. 

It's a stressfull situation you're in; but it could be worse.  Just make sure that you're comfortable in your gut with the surgical team you choose for your surgery.  Don't make the choice based on convenience, or how fast they can schedule the surgery.  You need to be comfortable and that will allow you the best possible outcome.

Good luck to you.
Lee
3.3 cm AN removal Jan. 2012

leapyrtwins

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #4 on: April 22, 2012, 03:09:44 pm »
Jared -

search the Forum for posts about SBI (Skull-Based Institute) and Dr. Shaninian.

Those who have gone there are few and far between (at least among Forumites).   Endoscopic removal of ANs isn't widely done at the present time; although only time will tell what will happen in the future.

Since you're already on the West Coast, I'd check out Dr. Chang @ Stanford.  You can't go wrong.

Just my two cents worth.

Good luck,

Jan
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

Justin McNabb

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #5 on: April 23, 2012, 11:07:46 pm »
Thanks guys for the replies and suggestions...I appreciate it a lot.  Thanks Lee for the encouragement too.  It is good to hear "success" stories...or at least ones without months and months of horrible complications and subsequent issues.  I will look more into those places.  I have been busy as my mom is struggling through treatment for very late stage 4 cancer and have been trying to help her. 

Thanks again!!  I will let you know how it goes!

Justin

CHD63

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #6 on: April 24, 2012, 07:55:53 am »
Ahhhhh ..... it's Justin, not Jared ..... :)

So sorry you are having to deal with your mother's serious illness at the same time as trying to make a decision for your own medical care.  Many, many prayers for both you and your mother.

Just one more thought.  For what it's worth, I know for a fact that at least House Ear works with patients who have no insurance so please consider sending a copy of your MRI to them or at least making contact with them to find out your options.

Continuing thoughts .....

Clarice
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

WilliamS

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Re: Doctor and Insurrance sugestions! Please Advise!
« Reply #7 on: April 26, 2012, 09:10:55 am »
Take a look at Dr Lunsford at the University of Pittsburgh Medical Center.  He has been doing GK surgery for a long time, has done over 2000 of them and did mine last month.  I was very impressed with him and his team.  Good luck,  Bill   

Bill

3.3cm
volume:  15cc
Diag:  1/18/12
GK:     3/20/12
MRI 9/12  3.0-2.8-2.5
MRI 4/13  2.8-2.9-2.3
MRI 4/14  2.7-2.7-2.2
MRI 4/16  2.6-2.2-1.9
MRI 2/20  1.7-1.5-1.2

 


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