Author Topic: Newly Diagnosed  (Read 12291 times)

MissMolly

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Newly Diagnosed
« on: March 16, 2009, 01:56:56 pm »
Hi there,
I was diagnosed last week with a 1cm AN and am still waiting to get an appointment at Mass Eye and Ear.  Needless to say, I've been walking around in a daze since then.

I had been having increasingly worsening tinnitus in my left ear.  Audiogram showed that I've lost some hearing as well, however, hearing in background noise is almost impossible.  I've been reading through some of the posts and see that the headaches, dizziness and vague nausea aren't unusual even with a tumor the size of mine.  My ENT told me that I shouldn't be having those symptoms.  Which is why I'm so anxious about my Mass E&E appointment! 

I'm grateful to have a place to come and learn.  Thanks.

Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

Jim Scott

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Newly Diagnosed
« Reply #1 on: March 16, 2009, 02:57:32 pm »
Hi, Miss Molly - and welcome ~

I'm sorry you have an acoustic neuroma but you should know that, here, you're among folks who understand your problems and concerns.  Please consider us as friends.  :)

Even though your AN may be relatively tiny, the location is what often determines the level of deficits you'll encounter.  Frankly, your ENT should be aware of that aspect of acoustic neuromas.  Unfortunately, some doctors are better informed on these benign tumors than others.  However, the Massachusetts Eye & Ear Infirmary has a fairly good reputation.  I hope and will pray that your appointment is productive and that you'll return to this forum and offer us an update.

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.

anissa

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Re: Newly Diagnosed
« Reply #2 on: March 16, 2009, 04:17:26 pm »
Welcome Molly  ;D  Sorry you have to be here but I hope you'll be glad to have found us.  This is a great group and I'm sure you'll learn a lot.  Good luck at your appointment.  You obviously know your symptoms and those are all typical of AN regardless of size.  As Jim said, its more about location.  Best wishes to you as you begin your journey.
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Pooter

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Re: Newly Diagnosed
« Reply #3 on: March 16, 2009, 05:24:24 pm »
Molly,

Welcome to the forum..  I trust you'll be in good hands and receive great information from Mass Eye and Ear.. Jim's right; they have a great reputation.  At 1 cm, I would expect all options to be on the table for you to consider, but that location of the tumor can play a factor in that, so talk to your doctor(s) about that..

Welcome aboard!

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

LisaP

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Re: Newly Diagnosed
« Reply #4 on: March 16, 2009, 05:34:47 pm »
Welcome Molly,

I was dx last March of 07 with a small AN.  I too go to the Mass Eye and Ear and see a Dr. McKenna.  I have daily symptoms of headaches, balance, facial, ear pain, nausea ect. and Dr. McKenna tried also to tell me that some of those symptoms where not related, well I did not believe him because they were not there before.

My first symptom was a tooth ache then I developed facial pain, when I told him that he said that is strange for a small AN.  My own opinion is that everyone is different and trust yourself.  If these symptoms feel real to you then they are.

Keep in touch, let me know which doctor you are seeing and stay with this forum, it will help.

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

suboo73

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Re: Newly Diagnosed
« Reply #5 on: March 16, 2009, 05:44:25 pm »
Frankly, your ENT should be aware of that aspect of acoustic neuromas.  Unfortunately, some doctors are better informed on these benign tumors than others. Jim

Hi Molly,  I too, extend a welcome to you.  (But sorry you had to join the AN club!)
I was misdiagnosed for a long time, going twice to local ENTs in 12+ years. 
Meanwhile, my sister goes with similar symptoms and has a diagnosis in 6 months, omgosh!
I used to be so angry about this - now i realize, as Jim points out, that some doctors just don't know. (even though you would think they WOULD at least have an idea.)

There are those here who didn't have this wonderful forum before treatment - God Bless them, and all the others, who now freely and patiently explain their experiences so we may all learn.

This is a WONDERFUL place, with FANTASTIC people!  So please, take a deep breath, and keep reading! 
When it gets to be too much, take a break. 
You can use the Personal Message function if you want to talk to other 'forumites' directly.

All my thoughts and prayers are with you.
Take care and keep in touch.

Sue

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

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Re: Newly Diagnosed
« Reply #6 on: March 16, 2009, 05:46:41 pm »
Good Golly Miss Molly - welcome to the forum  ;D  (I can't believe no one else thought to use that phrase).

As you'll soon find out, we're a humorous crowd, but we can be serious and we're full of information, advice, and opinions.

Please don't hesitate to ask us anything; that's what we're here for.

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

MissMolly

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Re: Newly Diagnosed
« Reply #7 on: March 16, 2009, 06:30:01 pm »
Thank you everybody.  I'm feeling so much better knowing that I'm not the only one.  I'll make sure I keep people posted as to how this whole thing progressed.  I do know that I feel fatigued a lot.  Not sure if that's because I'm working harder to hear b/c of my hearing loss and tinnitus or because of stress.  Most likely both.  Anyway, I'm just glad to have a place to talk and have some support.

With appreciation,
Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

Tumbleweed

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Re: Newly Diagnosed
« Reply #8 on: March 16, 2009, 11:48:12 pm »
Welcome to the forum, Molly. Sorry you have an AN but we're glad to have you join us here in that case.

Your fatigue may be due to the dizziness you mentioned you have. I have constant disequilibrium (a sensation of being off-balance, which is different than the spinning sensations known as vertigo), and it definitely makes me more fatigued because my brain is constantly struggling to determine which direction is straight up and correct for being off.

All of the symptoms you mentioned are common to having an AN.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

GRACE1

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Re: Newly Diagnosed
« Reply #9 on: March 17, 2009, 06:58:44 am »
Jan, you beat me to the Good Golly, Miss Molly.  That is the first thing I thought of. 

Molly:  Sorry you had to join our club, but you will find much info and peace of mind here.  Good luck to you on this journey.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Vivian B.

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Re: Newly Diagnosed
« Reply #10 on: March 17, 2009, 07:09:44 am »
Hi Molly,

I am also new to all of this. This forum is great. I have learnt a lot. Just remember that these tumours are benign and treatable. Everything will be o.k. It's normal to feel shaky when you first find out as it is all so new. Everybody on the forum is great and will help you along with any concerns. Keep well!

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

MissMolly

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Re: Newly Diagnosed
« Reply #11 on: March 17, 2009, 01:42:54 pm »
Yay!  Got an appointment (tentative if he has to be called in on a case) at 4:00 with Dr. McKenna at Mass Eye and Ear tomorrow.  I'm hoping I can get some more information and answers.  Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

leapyrtwins

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Re: Newly Diagnosed
« Reply #12 on: March 17, 2009, 04:41:54 pm »
Just remember that these tumours are benign and treatable. Everything will be o.k.

I just wanted to reinforce what Vivian said, Molly.

You are indeed fortunate - as we all are/were - that ANs are 99.9% benign and definitely treatable.  If it's any consolation, if you have to have a brain tumor, an AN is one of the ones you "want".

Glad you got an appt. with Dr. McKenna - from what I hear he's a very good doc.

Let us know what he has to say.

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

LisaP

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Re: Newly Diagnosed
« Reply #13 on: March 18, 2009, 05:14:37 am »
Miss Molly,

Let me know how you do with your appt with Dr. McKenna, he is also my doctor.  I like him, he is suppose to be the best.  He is a surgeon so he probably will only talk to you about surgery.

Like I said before trust yourself and go with what is best for you!

talk soon

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

NancyMc

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Re: Newly Diagnosed
« Reply #14 on: March 18, 2009, 06:51:51 am »
Molly,
Scarlett is in for surgery with Dr. McKenna's associate Dr. Lee, today.  We're all awaiting Rich's report this evening.  If you have a chance, swing by and give Rich a hug in the waiting area at MGH.  Wish I could be there to wait with him.
Good luck today.  My head will be in Dr. McKenna's hands in exactly three weeks.
Nancy
PS - Take something to read.  The waiting can be hours, especially for the hearing test.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

 


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