Author Topic: new and confused  (Read 6517 times)

cbp

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new and confused
« on: January 22, 2009, 02:06:15 pm »
Hi everyone-
I was diagnosed with a right AN on Nov. 1 following a severe vertigo attack that lasted several days and ended up with my staying in the hospital for several days. While in the hospital I had a MRI which showed the AN to be 1.6x1.4cm. I was referred to a team of doctors at Barrows Neurological Institue (Dr's. Porter, Weiskopff and Brachman).
Since the original MRI was not detailed enough they ordered a second MRI and when the results came back from that I was informed that I not only had 1 but 2 right side AN's. The second one is small, only 3mm.
I am still trying to wade through all the information and reasearch that is out there, trying to make the best decision on treatment.
My hearing is still good on the right side, just some minor hearing loss so far, but loud tinnitus. My biggest problem is my balance and dizziness. I feel like I live on a rocking boat, some days are manageable, others just down right miserable.
I'm still very unsure of which treatment direction to take...and the dr's. don't help much, since they say it is up to me.
I appreciate being able to come to this site and learn, it really is alot to process.
Camille
47 yrs. young and confused
« Last Edit: January 22, 2009, 02:55:16 pm by cbp »
Diagnosed Nov. 1, 08
1.6x1.5cm Right AN, secondary Right AN 4mm
Cyberknife at Barrows Neurological Institute, Phoenix, AZ
Feb. 24,25,26
Now playing the waiting game.

Jim Scott

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Re: new and confused
« Reply #1 on: January 22, 2009, 02:36:38 pm »
Hi - and welcome, Camille:

Being confused upon learning that you have an acoustic neuroma (2, in your case, which is unusual) is quite normal because, unlike some medical conditions, an acoustic neuroma is relatively rare (2 out of every 100,000 people) and most folks know little to nothing about them.  Fortunately, you've come to the right place.  The ANA has a free information packet that I would urge you to order to help expend your understanding of what you've been diagnosed with and how it can be treated.  You can also go to this website's home page and, under 'overview', find solid information about acoustic neuromas.

Fortunately, your AN is small and you do have options.   Surgery is one, non-invasive irradiation is another.  Although the final decision on treatment certainly is your choice, and yours, alone, we're here to help and support you as you make that decision as well as through the treatment and the recovery period.  Please use these forums as a resource and cinsider yourself among friends...because you are.  :)

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.

cbp

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Re: new and confused
« Reply #2 on: January 22, 2009, 02:58:20 pm »
Thanks for the welcome, Jim.
I have the packet of info from the ANA. It was good info that has helped me a lot.
It is nice to have a forum to come to and know that others here have and are experiencing the same type of questions and feelings.
Thanks!
Diagnosed Nov. 1, 08
1.6x1.5cm Right AN, secondary Right AN 4mm
Cyberknife at Barrows Neurological Institute, Phoenix, AZ
Feb. 24,25,26
Now playing the waiting game.

Pooter

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Re: new and confused
« Reply #3 on: January 22, 2009, 06:52:25 pm »
Camille,

Welcome to the forum!  As Jim said, you're among friends.  Most us have been where you are and know well the unassuredness, worrying, and stress that comes along with a diagnosis like that.  This is the first that I've heard of someone having two AN's on the same side.  Are they sure it's 2 rather than one that is just thinner between?  I've often heard of people saying they have "bi-lobbed" AN's that look like 2 balloons tied together.  I'm curious if that's it?

Regardless, welcome to the forum and ask away because we'll help any way we can!

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

leapyrtwins

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Re: new and confused
« Reply #4 on: January 22, 2009, 09:58:43 pm »
Hi, Camille and welcome to the forum  ;D

When I was diagnosed, in April 2007, I was about your age.  I found an incredible doctor who does both radiation (Gamma Knife) and surgery and, like you, I was initially very frustrated because he absolutely refused to tell me which treatment I should choose.  I tried to get him to make my decision any way I possibly could, but he just kept telling me it was my decision.  He was right - it just took me a while to realize it.

AN treatment decisions - if you have a choice - are very personal decisions.  What is right for one patient, isn't necessarily right for another.  There are a lot of "what ifs" and a lot of unknowns because everyone's AN journey is similar, but different at the same time.  So you need to do your research, educate yourself on the pros and cons of radiation and surgery, and pick what is best for you.  I'll be honest with you, this will probably be one of the hardest parts of your AN journey. 

Many of us, myself included, eventually reached a place in the decision-making process where we knew in our "gut" which doctor(s) and which treatment option was right for us.  In time, you'll be able to reach this same "place".       

I'm glad to hear that you received literature from the ANA, I always recommend it to newbies, because in my opinion it is an excellent source of information.

Feel free to ask us anything, that's one of the things we're here for.

I hang around the forum a lot, but if you ever want to PM me, please feel free.  My phone number is listed on the ANA's WTT (willing to talk) list also, in case you'd like to speak in person.

Good luck,

Jan (Benjamin)  
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

cbp

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Re: new and confused
« Reply #5 on: January 24, 2009, 01:44:54 pm »
Jan and Brian, thanks for the welcome.
Knowing that others have "been there" and have experienced some of the same things is reassuring.
Brian- I was wondering if the 2 were connected someway...however, all three of my docs agree that they are separate. The smaller is within the IAC and the larger one is not in the IAC at all. One doc thinks the larger may be a meningioma...still waiting to hear from other docs on that. Yes, it is strange...docs all agree that this is very rare.
Jan- I know that the decision is mine to make...I often think it would be easier if the doctors could just say, "here is what you have, and here is what we need to do and this is when we need to do it." But, I guess the advances of medicine are giving patients more and more options every day, and that is a positive thing.
Thanks again for the welcome.
Camille
Diagnosed Nov. 1, 08
1.6x1.5cm Right AN, secondary Right AN 4mm
Cyberknife at Barrows Neurological Institute, Phoenix, AZ
Feb. 24,25,26
Now playing the waiting game.

Pooter

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Re: new and confused
« Reply #6 on: January 26, 2009, 05:53:42 pm »
It's not impossible that there are two, but just very rare (from my experience which is very limited).  If it does end up being a mengioma (one of them at least), then that's good news.  Mengioma's are easier to get out with surgery than AN's.  MsMaggie had a mengioma (they couldn't tell pre-op but during surgery determined it was that) and the surgery was considerably less than mine and I saw her two weeks out of surgery and you couldn't even tell she had it!

Keep us updated on what the doctors give you as options, etc.. I'm curious how they'll deal with two tumors relatively close together.

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

kathee

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Re: new and confused
« Reply #7 on: February 01, 2009, 05:51:37 pm »
Hi Camille,

I just returned from Barrow this week.  I had Cyberknife because the docs said they could most likely save my hearing.  Like you I have extreme problems with vertigo and balance, but not much hearing loss.  I will now need to go for vestibular rehab.                                                                           

I found the doctors there very kind and informative.  Cyberknife wasn't too bad.  Sounded better to me than surgery. 

Let us know what you decide.

Best Wishes,

Kathee
Cyberknife done in Phoenix, January 2009

MAlegant

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Re: new and confused
« Reply #8 on: February 01, 2009, 07:24:42 pm »
Hi Camille,
One of my surgeons trained at Barrows (after Case) and he was quite amazing.  You're in good hands.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

mimoore

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Re: new and confused
« Reply #9 on: February 01, 2009, 07:34:34 pm »
Welcome Camille.
Scary stuff huh? It will get easier, we are here for you.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

suboo73

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Re: new and confused
« Reply #10 on: February 02, 2009, 05:43:28 am »
Hi Camille.  How are you today?
I have been researching here since October 08.  There is so much to learn and the folks here are wonderful!

I too, have been frustrated about treatment decisions/options.  Do i continue Watch & Wait, or choose a treatment now?
I have been for several opinions and don't think i am done yet.  Everyone here seems to indicate that i will know when the moment of decision has arrived.
So i continue my quest.

For me, i am SO GLAD to have this forum and feel i have learned a lot.  Sometimes, though, i have to take a break from it all.
Good luck in finding your answers!
Keep us posted.

Sincerely,
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

cbp

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Re: new and confused
« Reply #11 on: February 12, 2009, 09:30:22 am »
Thank you to everyone for their positive support!
After 3 months of researching my treatment options, 2 second opinions (one from House), and lots of weighing the pros and cons, I have decided to do the Cyberknife Radiation. For me, this seemed to be my best option since I can treat both tumors at the same time and hopefully maintain some hearing. Having the 2 tumors made surgery a little tricky and all the surgeons agreed that the retroseigmoid approach would need to be used, but that the small secondary tumor would more than likely have to be left, which meant possible treatment for that later on, something I really would rather not have to do.
I am scheduled for my Cyberknife on Feb. 23, 24, 25 at Barrows Neurological Institute in Phoenix. I am keeping a positive outlook and hoping for the best while being realistic that with radiation comes the possibility of some increased symptoms at times.
Again, thank you for the support and time that those of you here give. It certainly has helped me to make this hard decision, knowing that others have experienced what I am and will be experiencing.
Thanks again!
Diagnosed Nov. 1, 08
1.6x1.5cm Right AN, secondary Right AN 4mm
Cyberknife at Barrows Neurological Institute, Phoenix, AZ
Feb. 24,25,26
Now playing the waiting game.

sgerrard

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Re: new and confused
« Reply #12 on: February 12, 2009, 10:16:28 am »
Hi Camille,

A very late welcome to the forum from me.

It sounds like a good plan to me. Having two ANs makes radiation that much more attractive. Barrows is a good place, and CK is a good choice. The treatment itself will be easy, and yes, the road ahead will have a few bumps, especially the first six months or so, but I bet you will do just fine.

I put you on the AN Calendar. Best wishes for a great treatment and outcome.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: new and confused
« Reply #13 on: February 12, 2009, 10:53:10 am »
Hi Camille and congrats on completing the decision making process... a total monkey off the back, eh? :)

MaryBKAZ and shoegirl were both treated at BNI... Mary, I believe, within the past year... and shoegirl approx 3 yrs ago. I know there are others but those 2 come to mind first. If you try doing a "search" option from the home page for the forums and type in their names, you will see posts done by them and their experiences at BNI.

Sending wellness wishes to you and please keep us updated on how you do.

Again, congrats!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Vivian B.

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Re: new and confused
« Reply #14 on: March 05, 2009, 11:23:27 am »
Hi there,

My name is Vivian. I live in Toronto. I am 46. I share your thoughts as I have been recently diagnosed with one myself and can't seem to stop thinking about it. It's good to know that there are other people sharing the same thoughts. To calm myself I keep on thinking that at least there are options and it's benign and hopefully surgery is more successful now than it used to be.

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

 


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