Author Topic: Just diagnosed with AN  (Read 6550 times)

cindyjarrett

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Just diagnosed with AN
« on: August 14, 2012, 11:15:08 am »
I was just diagnosed with an AN on my left side.  It is 2 cm x 1.7 cm 1.4 cm.  I do have an appointment in two weeks to see a specialist.  I guess it is the not knowing.  I have read a lot of info from this web site.  My big question is how do you know what to do.  I only have high pitch hearing loss with ringing in my left ear--no other symptoms.  I have turned this over to God but am scared.
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

Jim Scott

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Re: Just diagnosed with AN
« Reply #1 on: August 14, 2012, 12:58:01 pm »
Hi, Cindy ~

I'm sorry you're the recipient of an AN diagnosis but glad that you found the ANA website, registered and decided to post.

Your AN is 'medium' sized and depending on the exact configuration, is likely treatable via radiation or, of course, surgery.  Your consult with the specialist will be crucial but we generally advise newly diagnosed AN patients to obtain more than one medical opinion, if possible.  Other posters will add much more, I'm sure, but for now I just wanted to welcome you and assure that this diagnosis is not the end of the world.  These tumors are almost never malignant and always treatable.  The majority of AN patients do quite well post-op or post-radiation.   Frankly, the shock of the initial diagnosis, the fear of the unknown (and sometimes unknowable) and the seemingly overwhelming choices and decisions to be made, some possibly life-altering can certainly be daunting.  That's why we're here. 

The forums are primarily populated by AN patients that have been through surgery, radiation or, sometimes (as in my case) both.  Others are relatives of AN patients and some of our members are diagnosed and in 'observation' mode (called 'watch-and-wait') or awaiting surgery or radiation treatment in the near future.  We all have a story to tell and, most important, we understand your fears and anxieties.  We're here to advise, suggest and, most of all, support you in whatever way is appropriate.  We don't judge or second-guess your decisions and although we are optimistic, we don't sugarcoat the very real issues ANs often present.

I hope you'll consider these AN forums as a resource in the weeks to come and avail yourself of the collective knowledge of our members, all of whom are eager to welcome you and help in whatever way they can.  I look forward to seeing your posts as you continue on this journey none of us ever really wanted to take.

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: Just diagnosed with AN
« Reply #2 on: August 14, 2012, 08:38:30 pm »
Cindy -

it's perfectly normal to be scared, but you'll get through this.  And the Forum is a great place for ANers; it's proof that you're not alone.

The treatment decision is perhaps the hardest part of the AN Journey.  Some of us choose surgery, some radiation - or as Jim mentioned - some decide to watch & wait.  My doc (neurotologist) offered me the choice of radiation or surgery, and it was a hard choice but I went with my "gut" and opted for surgery.  It was right for me; it may or may not be right for you.   Ultimately you need to do what you feel is right for you - once you've educated yourself by consulting with doctors, reading about ANs, etc.

The ANA offers some excellent literature - free for the asking; take them up on this offer.  You'll find the literature very helpful. 

I only consulted with one doctor and I knew immediately that he was the "one", but there's nothing wrong with consulting with multiple doctors.  You should talk to as many doctors as you need to in order to make your decision.  If the waters get muddied along the way - sometimes multiple opinions can be confusing and/or conflicting - take a break for a while.  Most ANs are very slow growing, so you have time to digest things before deciding on treatment.

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

LisaM

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Re: Just diagnosed with AN
« Reply #3 on: August 14, 2012, 10:16:00 pm »
Greetings Cindy,

Take your time.  If one must have a brain tumor, these are the ones to have!  BENIGN is a very good word!  The diagnosis can be overwhelming but take your time and find the right treatment path for you.  It's good to find out how fast the tumor is growing,which in my case, was done via MRI 3 months after the first MRI.  Lucky for me, the AN in my head was/is slow growing and may not be growing at all.  I still have my hearing.  Fingers crossed I keep it.  High pitched tinnitus are my only symptoms to speak of.

After lots of deliberation and two surgical opinions, one at House Ear Institute and the other at Skull Base Institute. I chose to wait and watch... and  I have made some major diet and lifestyle changes.  The link below was incredibly helpful:

http://www.anausa.org/smf/index.php?topic=3791.0

Take a deep breath... let the initial shock wear off so you can have clear thoughts on what you think about all of this.

Here's to your health!

Best,
Lisa M
Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)

cindyjarrett

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Re: Just diagnosed with AN
« Reply #4 on: August 16, 2012, 11:47:34 am »
Thanks so much to those who replied to me.  I did receive a call today from the Mayo Clinic in Minn.  and after reviewing my faxed info, they will be calling back later today with an appointment.  I live in Virginia and will be going to University of Virginia on August 27.  I think this will be a good starting point but am still looking at other options.  Asking God to let me know what to do.  My husband says it is hard for me to not be in control.  I don't like being in limbo.  I think once I am able to talk with the doctors I will have a better about my options.  Thanks so much.  Keep me in your prayers.
Diagnosed 8/9/12 with an on left side
19 mm x 17 mm x 13 mm
tinnitus with high pitch hearing loss
Will have gammaknife at UVA with Dr. Sheehan on 10/12/12
Trusting in God

Chances3

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Re: Just diagnosed with AN
« Reply #5 on: August 16, 2012, 02:56:05 pm »
Hi Cindy,

I'm sorry you have a AN.  I had my surgically removed two years ago.  My faith saw me through it all !
I placed it in God's hands.  I will pray that God gives you the wisdom to chose the correct medical care that is best for you.   In the meantime, don't rush into anything.  Learn as much as you can so that you can make an informed decision that is right for you. 

God Bless.

skipg

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Re: Just diagnosed with AN
« Reply #6 on: August 17, 2012, 10:32:55 am »
Hi Cindy and welcome to "our" world.

First thing is to try and relax and realize that this is the best type of brain tumor to have. You have time and plenty of options.

I have heard nothing but good news about UVA and the Gamma Knife. They also have a new one at Riverside in Newport News. If I remember correctly this was in conjunction with UVA. Norfolk General has the Cyber Knife with Dr Scott Williams who trained at Stanford. There are 2 AN surgeons in the Norfolk area. I have consulted with all 3 and everyone agreed to watch and wait. Now that I had a growth spurt the Drs I returned to gave me options but none were being pushy. I have even spoken with a Dr Thorton at The Hampton Proton Center. You have time and a lot of choices. Whatever you decision it is ultimately up to you to decide what you feel is the best course of action.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

leapyrtwins

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Re: Just diagnosed with AN
« Reply #7 on: August 24, 2012, 06:37:02 pm »
My husband says it is hard for me to not be in control.

Understand this completely; I'm a certified control freak!

After I made my treatment decision I just put myself into the very capable hands of my two docs (neurosurgeon & neurotologist) and let things go from there.  In fact, the last words I said on the operating table were "I'm releasing control now".  ;D

Prayers,

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