Author Topic: found out yesterday  (Read 13810 times)

fav

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found out yesterday
« on: September 15, 2010, 11:05:47 am »
hello all,
i am glad i found this place.
after experiencing sudden hearing loss (total) 10 days ago an mri found a 2cm tumor on the eighth nerve.
the ent wants this addressed asap as do i.
my insurance co will not approve house clinic but has reffered my to a dr. jeffery harris i believe from scripps.
anyone know of him?
thanks

leapyrtwins

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Re: found out yesterday
« Reply #1 on: September 15, 2010, 11:29:50 am »
Hi, fav.

I'm in Illinois and don't personally know any docs in San Diego @ Scripps or elsewhere, but Dale (user name dalern) recently had BAHA surgery with Dr. Harris.  I'm sure she'd be happy to help you.

Also, if you search on "San Diego" - the search box is on the top lefthand side of the screen under your user info - you'll find posts related to docs in San Diego.

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

dalern

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Re: found out yesterday
« Reply #2 on: September 15, 2010, 11:53:13 am »
Hi fav,
Dr. Harris is wonderful. He just did my BAHA surgery in June for my SSD. His primary location is UCSD which is where I see him and had my surgery. He us also on staff at Scripps and is well known and highly respected. You will be in the very best care. Please feel free to email me here. I'm on my way back to San Diego from a business trip and will be home late this afternoon. Would be glad to talk to you on the phone as well.
Talk to you soon.
~Dale

(Dale and all, personal contact info should not be noted on public forum here for your own privacy/protection. Folks can PM/email here to obtain your personal contact info, if need be. Thanks for understanding. Phyl)
« Last Edit: September 15, 2010, 04:37:10 pm by ppearl214 »
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

CHD63

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Re: found out yesterday
« Reply #3 on: September 15, 2010, 08:25:36 pm »
Hi fav and welcome to this forum .....

You described my situation leading to the diagnosis of an AN, almost exactly.

Glad Dale has reassured you about Dr. Harris.  I have a thought re insurance ..... I went "out of network" for my surgery and my neurosurgeon's office staff did all of the negotiating for me and convinced the insurance company to pay the entire cost.  If you really would like to go to HEI, you might check with them (maybe you have already ???) and see if they would negotiate for you.

Best 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

Jim Scott

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Re: found out yesterday
« Reply #4 on: September 16, 2010, 12:38:10 pm »
Hi and welcome, Fav ~

I'm sorry you were diagnosed with an acoustic neuroma but I hope you'll be reassured from reading the posts on these forums that what you have is benign and eminently treatable.  We're happy to share information, offer solicited advice and unqualified support  to all AN patients.  You're part of a family, here.  Please 'stop by' as often as you wish.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

fav

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Re: found out yesterday
« Reply #5 on: September 16, 2010, 02:05:15 pm »
thank's dale and to all of you that responded with such kind words.
my appt with dr harris is 9/21 and after speaking with dale and doing some research on my own, i am feeling more confident about this dr.
a warm and kind bunch you all are.
best
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leapyrtwins

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Re: found out yesterday
« Reply #6 on: September 16, 2010, 08:01:12 pm »
Good luck with your appointment, fav.

Hope it goes well and that you like Dr. Harris.

Having faith, trust, and confidence in one's doctor is crucial.

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

moe

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Re: found out yesterday
« Reply #7 on: September 16, 2010, 10:01:38 pm »
Hi Fav,
Just wanted to welcome you to the site, let us know how things proceed.
This is a great place to get advice, info, support.  ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

fav

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Re: found out yesterday
« Reply #8 on: September 21, 2010, 02:10:02 pm »
after this mornings appt with dr harris and dr carter, these men have my complete confidence.
at 2cm, i was told i have an option of surgery or radiation.
i am 56 and must make this decsion soon.
best
dan

Jim Scott

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Re: found out yesterday
« Reply #9 on: September 21, 2010, 02:13:25 pm »
Dan ~

Thanks for the update.  Finding doctors you can feel confident about is a major hurdle you've now surmounted.  Choosing a treatment is always the toughest part but whatever you decide, we'll support you and give you any information we have that might help. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: found out yesterday
« Reply #10 on: September 21, 2010, 03:24:03 pm »
Dan -

options are good.  I had both options and although I initially thought there was "no way" I was having surgery ultimately that's what I decided to do.  It was a great choice for me, but others choose radiation and was an equally great choice for them.

Educate yourself, weigh the pros and cons of each treatment, and then decide what is best for YOU.  It's a very tough decision - but the other tough decision is deciding on a doctor (or doctors) and it sounds like you've already got that figured out.

If you haven't yet, you should contact the ANA for their informational brochures.  You'll find they are a great resource - just like this Forum is  ;D

Best,

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

fav

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Re: found out yesterday
« Reply #11 on: September 22, 2010, 08:04:05 pm »
any one here ever had treatment with a Linear Accelerator?

nanramone

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Re: found out yesterday
« Reply #12 on: September 22, 2010, 08:25:03 pm »
I agree with Jan - at first, there was absolutely NO way I was having radiation...and later, I changed my mind! Do the research and trust your own feelings after getting all the info you can~

Nancy

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Re: found out yesterday
« Reply #13 on: September 24, 2010, 11:23:59 am »
Fav,
Sorry late to this party, but I just wanted to welcome you and mention that the toughest part of my AN journey was deciding what type of treatment to have.  You will have to go with your gut...think long and hard about it and after some time and weighing pros and cons you will come to a decision you are comfortable with.  Then you will get a nice sense of relief...its a good feeling.
Good luck to you and sorry I don't have any information on the linear accelerator...but it sounds pretty cool.

Welcome and take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: found out yesterday
« Reply #14 on: September 24, 2010, 12:57:01 pm »
any one here ever had treatment with a Linear Accelerator?

Yes.  I underwent 26 FSR treatments as a planned follow-up to AN debulking surgery in 2006.  However, I'm not an expert on radiation apparatus and procedures.  I can only offer my experience as an AN patient treated on a LINAC.  It was tedious but painless and ultimately successful.  A bit of a challenge if you're claustrophobic (I'm not) but otherwise, quite tolerable with no side effects, in my case, which may not be typical.  I trust other members will be posting more detailed information, soon.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

 


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