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Author Topic: New diagnosis  (Read 2670 times)

nancyllindsay

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New diagnosis
« on: January 02, 2010, 04:56:11 pm »
After describing my symptoms (hearing loss in left ear, tiniitus, fullness in ear, balance problems) to my ENT, he did an extensive hearing test and recommended an MRI to "rule out any tumors which are rare." Well, I have a tumor but at this point that's all I know because 2 days after giving me that news, my doctor dropped dead (talk about killing the messenger!) But, the same day that he gave me the diagnosis his office staff made an appointment for me at the House Clinic in L.A. and got all my MRI films, reports, and doctor's notes together for me to take to my appointment.

I don't have anything to report at this point but I do want to say that in the 4 weeks since receiving the news I've made a point to educate myself on AN, possible treatments, and possible outcomes. This website and the forum have been so helpful. It's clear to me that all treatments have drawbacks, some more dire than others, but it encourages me to read how other people handle these things. I have many questions for the doctor at House and I just hope that he will have the patience and give me the time to get them all answered.

Nan
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Jim Scott

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Re: New diagnosis
« Reply #1 on: January 02, 2010, 05:10:59 pm »
Hello Nan - and welcome ~

I'm sorry you've been diagnosed with an acoustic neuroma but glad you discovered the ANA website and, especially, these forums.  Thanks for your kind words.

You seem to be on the right track as far as performing research and your upcoming consult at the famed House Ear Institute.  We'll look for your future posts as you continue on your 'AN journey'.

Jim
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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.

Tamster

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Re: New diagnosis
« Reply #2 on: January 02, 2010, 05:13:11 pm »
Welcome to the forum, Nancy. We're glad you found us. Feel free to ask questions and we'll do our best to share our experiences with you.

Tammy
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6mm AN left side, diagnosed Sept 22, 2009
Middle Fossa  December 8th 2009,  Drs. Brackmann and Schwartz.
Facial nerve preserved, tumor out, SSD. tinnitus.

Life isn't t about waiting for the storm to pass. It's about learning how to dance in the rain.

http://www.caringbridge.org/visit/Tamst

lawmama

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Re: New diagnosis
« Reply #3 on: January 02, 2010, 05:22:06 pm »
Nan,

So sorry to hear about your diagnosis.  Wow, that is quite a month you have had!!!  It's funny, I think when my doctor sent me for an MRI, he said something similar.  I'm sorry that you are also one of the unlucky rare ones.  I'm also sorry to hear that your doctor passed away.    

First of all, I commend you for deciding to do a lot of research.  I think knowing all of the possibilities, risks, and odds makes it a lot easier to make decisions about when and if to treat your AN and how.  I guess I would just warn you to try not to panic.  There are a lot of scary stories out there, but there are also a lot of success stories.  I am only (just shy of) 3 weeks post-op and I consider myself pretty lucky so far.  I am SSD, but my balance is getting better every day and I can imagine that I will be returning to my "regular" life within a few more weeks.  Not everyone is so lucky, but even most people with more complications do resume normal lives.  You will be ok!

House has a great reputation, so I think you will get a lot of answers there.  I'm sure you will also find a lot of support on this board.  I have found more support here than I could have ever imagined.  You have just found a whole community of people who really, truly understand what you are going through right now.  That's strength in your corner!

Lyn
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9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

msmaggie

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Re: New diagnosis
« Reply #4 on: January 02, 2010, 05:31:37 pm »
Welcome to our little corner of the world, an unexpected corner in which you just found yourself placed.  It is a friendly place, even if we are sorry for your diagnosis.  It can be scary, but there are lots of us to hold your hand and give you encouraging words.  There are no dumb questions or taboo areas. You can whine, moan, rave, rant, whatever seems to be the most necessary at the time.  House is a great place to start.  I didn't have my surgery there, but I sent my MRI to them and had several very helpful phone conferences with them.  Keep us posted on what you find out about your situation!

Priscilla
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

lori67

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Re: New diagnosis
« Reply #5 on: January 02, 2010, 06:31:48 pm »
Nan,

Welcome to the family!  Sometimes you have to really look for the silver lining in the black cloud that seems to be hanging over after an AN diagnosis, but #1 - you've come to the right place for support and information and #2 - you're in better shape than your doctor!   ;)   No offense meant to your dearly departed doc.

I'm sure the doctors will have the patience to answer any questions you have - they should!  That's the least they can do.  I hope your appointment with them goes well and I hope you get all your questions answered.

Good luck!
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.

leapyrtwins

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Re: New diagnosis
« Reply #6 on: January 02, 2010, 06:48:07 pm »
Hi, Nan and welcome to the Forum  ;D

As Lori said, you've come to the right place for help and support.  I also recommend contacting the ANA and asking them for their informational brochures - very helpful to say the least.

I'm sorry to hear about your ENT, but glad you have an appt. @ HEI so you'll be able to start gathering the information necessary to make your treatment decision.  Since HEI is pretty much known for surgery, you should also consult with a doc who does radiation - which is usually a very good option for those with an AN of 3 cms or less. 

If you are in California, Dr. Chang @ Stanford would be a wonderful choice.  If you're not in California, let us know what part of the country you are from and someone is sure to have a few suggestions for you.

Best,

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

JerseyGirl2

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Re: New diagnosis
« Reply #7 on: January 02, 2010, 07:51:18 pm »
Quote from: nancyllindsay on January 02, 2010, 04:56:11 pm

I have many questions for the doctor at House and I just hope that he will have the patience and give me the time to get them all answered.

House is an amazing place and you can feel assured that the doctor with whom you consult will have patience in abundance and will give you answers based on years of experience. It sounds as though you live in California -- since you're visiting House rather than doing the phone consult routine -- so if you decide to go the surgery route, you'll be in excellent hands without having to travel very far. I went to House from New Jersey and would do it again in a heartbeat.

Best wishes as you continue your research,

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

CHD63

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Re: New diagnosis
« Reply #8 on: January 02, 2010, 09:35:00 pm »
Nan .....

Just adding my welcome to this forum.  Tell us a little more about the size and location of your AN, etc.  We are here to support and assist in any way we can during your AN journey.  Lots of caring people here who have been on this walk before (or are walking .....).

Best thoughts.

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

Adrienne

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Re: New diagnosis
« Reply #9 on: January 02, 2010, 09:58:54 pm »
Welcome! 

Wow, what a story.  Sorry to hear about your doctor!

The story your ENT gave you was the exact one mine told me.  I was just 'ruling something out' by getting an MRI.  Not to worry at all.  The rest is history......

Good luck.  Sounds like you are on the right track with your House referral.  Everyone on the forum has wonderful things to say about House.

Sorry you had to join this group though!

Adrienne
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3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!
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