Author Topic: recent diagnosis  (Read 3548 times)

msmaggie

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recent diagnosis
« on: August 17, 2008, 06:45:26 pm »
Hi to all,
I was diagnosed with AN after an MRI about a week ago.  I have an appointment with a neurotologist in another two weeks and have been reading all I can in the meantime.  My tumor is 1.7x1.4x1.3, so I guess that places me in the medium range.  It has been more than a little overwhelming to try to take all this in. When I looked up various ear clinics on the internet, it seemed like the people who advocate surgery think you would have to be crazy to consider radiation and vice-versa.  I'm in TX, so I think there are good doctors in the area, but admit that I am terribly confused!
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.

Jeanlea

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Re: recent diagnosis
« Reply #1 on: August 17, 2008, 07:25:23 pm »
Hi Maggie,

Welcome to the group, but sorry you had to join.  It sounds like you are on the right path by doing your research.  There are some doctors that do both radiation and surgery.  Hearing from them might be helpful.  There are others on here from Texas that I'm sure will be willing to share where they went for treatment.  It is overwhelming to get this news in the beginning, but this forum is filled with people who have gone through treatment and are doing well.  The people on this list are very happy to answer questions and offer support and encouragement.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

msmaggie

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Re: recent diagnosis
« Reply #2 on: August 17, 2008, 07:39:19 pm »
Well, it wasn't necessarily a club I was standing in line to join, but I am glad for the company!  I already know I can use the support, and any info on drs. in TX (Houston area) that anyone wants to pass along. 
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.

leapyrtwins

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Re: recent diagnosis
« Reply #3 on: August 17, 2008, 09:52:42 pm »
Hi msmaggie  :)

I think Boppie, Kaybo and Pooter are from Texas - possibly the Houston area.  I'm sure it's just a matter of time before they find this thread and respond to your post.

The size of your AN should "qualify" you for either radiation or surgery, and as Jean said, there are some doctors who do both.  Treatment is a personal choice and you should decide which treatment works best for you.

You will find that the members of this forum will support you no matter which decision you make.  Although I had surgery and my outcome was excellent, I certainly don't advocate it.  It's best for some; not best for others.  Radiation, while not right for me, isn't something I try to discourage others from choosing.  Those who have had radiation have found it to be a wonderful choice.

If you haven't already, I'd like to suggest you contact the ANA and ask them for their literature.  I personally found it very helpful and informative.

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

msmaggie

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Re: recent diagnosis
« Reply #4 on: August 17, 2008, 10:04:03 pm »
Thanks for the feedback, Jan!  I have already gotten the literature from ANUSA and found it to be helpful.  BTW, I have family in Chicago, so it is on my shortlist for consideration for treatment.
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.

msmaggie

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Re: recent diagnosis
« Reply #5 on: August 17, 2008, 10:11:42 pm »
Oh wait....I didn't mention that my tumor is measured in cm, not mm.  I think that makes a difference!
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.

leapyrtwins

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Re: recent diagnosis
« Reply #6 on: August 17, 2008, 10:13:00 pm »
maggie -

glad to hear about the family in Chicago.  I hope you'll be joining all of us for the 2009 ANA Symposium at The Drake Hotel in Chicago next August.  I'm an official sponsor!  :)

Here's a place for your short list.  Ear Institute of Chicago; main office in Hinsdale, secondary offices in Elk Grove Village and Chicago.  Docs are Richard Wiet (member of the ANA Medical Advisory board) and Robert Battista (my guy   ;D ).  They have an excellent reputation around here and do both radiation and surgery.  Both docs are affiliated with Northwestern University Medical School - they teach there.  In addition, Dr. Wiet did the first cochlear implant in Illinois.  Dr. Battista performed both my AN and BAHA surgeries.  You can check them out at www.chicagoear.com

Okay, advertisement is now over - and no, I don't work on commission for them  :D  But if you do go there, tell them I sent you.

BTW, figured you meant cm, mm wouldn't have made sense.

Jan
« Last Edit: August 17, 2008, 10:17:57 pm by leapyrtwins »
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

Pooter

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Re: recent diagnosis
« Reply #7 on: August 17, 2008, 10:52:10 pm »
Maggie - Welcome to the forum!  I've already sent you some info via PM so I hope you find it helpful.  One thing I forgot to mention, Dr Vrabec does both radiation and surgery.  I was even told that perhaps they would "debulk" the tumor and possibly use radiation afterward in lieu of more damage to the facial nerve.  I guess I was lucky because they think they got it all!  This is a GREAT place for information and I welcome you to lean on us all for that.  Being the size that it is, you have a multitude of options available to you.  They're typically slow growing (1 - 2 mm per year) so you have some time.  Some of us didn't have alot of time or options when first diagnosed (Jim comes to mind), but you thankfully do and will decide what is best for you with your doctor's input.  So, you are very welcome here and to ask all the questions you want.  I was told by a very wise person (and you know who you are) that there are no stupid questions here.  We've seen it all, heard it all, and many of us have lived it.  Let us know how the appointment goes!

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

msmaggie

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Re: recent diagnosis
« Reply #8 on: August 18, 2008, 08:40:10 am »
Thanks, all of you, for the input.  I didn't get much sleep last night.  Having been disgustingly healthy and mostly hardy for all of my adult life, I am having a teensy bit of trouble putting this into some kind of perspective.  We don't like losing control over our lives, do we? I think that is at the root of it for me.  I have never had a broken bone, no surgeries not connected with childbirth--I don't even get colds! I have been praying that God will help me to let go of my fears and put myself in His loving hands. I know I am blessed by the fact that this is not malignant and is not life threatening.  In the big picture, I have a wonderful life and have much for which to be grateful.  I keep reminding myself of that. This weekend I need to tell my kids ( both adults) about the situation. Sigh...Moving from caregiver to care receiver will be a character building experience. :-\

Another question.  I see the term "SSD" in some of the threads and I don't know what that means.

Maggie
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.

Sam Rush

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Re: recent diagnosis
« Reply #9 on: August 18, 2008, 08:48:05 am »
SSD means single sided deafness
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

fbarbera

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Re: recent diagnosis
« Reply #10 on: August 18, 2008, 08:54:17 am »
Hello there,

SSD means single-sided deafness. 

When I was diagnosed a year ago, I had a hard time believing how conflicted medical opinions seemed to be and how confusing it was to decide on a treatment.  My own approach was to consult with several different doctors, each of whom brought different perspectives to my treatment.  After a few weeks of research and consultations, I reached a point where I felt confident in my decision to be treated with CK at Stanford.  I outline my decision-making process, as well as my post-treatment experience, in detail in my website below.

Whatever treatment you select, the success rates are very high (95-99%) and even a "failure" just means you will have to have another treatment.  In other words, you may have some bumps and hiccups along the way, but at the end of the day, you will be just fine.   

Best of luck with your process.  Please let me know if I can answer any questions to help you along.

Best regards,

Francesco


Debbi

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Re: recent diagnosis
« Reply #11 on: August 18, 2008, 10:18:22 am »
Hi Maggie-

Glad you found this group and hope that you'll find some answers here.  I think we all felt confused and overwhelmed during the first few weeks after diagnosis.  You can't help but feel that way! 

Like you, I have always been healthy and this was like getting a great big bucket of icy water dumped on my head.  However, now that I am 3.5 months post op, I can tell you that life is pretty darned good.  I had to give up my role as caregiver for awhile, and you are correct that it is a character building experience!   But, hey, character is a good thing, right?

I am sure you will hear from others in the TX area who can give you some recomendations on treatment teams in your area.  As for me, all I can tell you is that if this is the worst thing I ever have to deal with medically, I shall consider myself truly blessed.

Hang in there!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

msmaggie

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Re: recent diagnosis
« Reply #12 on: August 18, 2008, 10:19:36 am »
Francesco,

Wow! What a journey you have had, as have all of you kind enough to share your experiences.  Just from reading descriptions of various clinics, I can tell that drs. can be very territorial about their areas of expertise.  I will keep reading and researching to find my comfort level concerning treatment.  I want to be able to keep working, something radiation will enable me to do, but the side effects that seem to be inevitable, no matter what the treatment, may sideline me.  Guess it will just have to be a fact of life.

Maggie
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.

Jim Scott

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Re: recent diagnosis
« Reply #13 on: August 18, 2008, 11:18:03 am »
msmaggie:

Let me offer my greetings - and my regret that you've been diagnosed with an acoustic neuroma.  However, I believe you'll you'll find these forums both informative and supportive, populated by folks who've been through the same journey (discovery, decisions, surgery/radiation and recovery).  Although these tumors are almost never malignant and quite treatable, as you know, they are in a location that makes them problematic but not impossible to either remove or destroy, depending on the treatment approach (surgery or radiation).  I'm sure our Texas-based members will be able to offer you the names of doctors and facilities in your general area that you may wish to pursue as you seek to find a course of action to address your AN.

As Brian ('Pooter') mentioned, some of us didn't have the luxury of mulling over a form of treatment and were pretty much rushed into surgery out of necessity (see my signature).  In my case, surgery followed by radiation.  Fortunately, I came out of both treatments sans complications.  Now, my AN is shrinking and undergoing necrosis (cell death) so my story has a happy ending.   :)

As an AN patient who was once pretty much where you are now, I can understand your fears and misgivings.  As a Christian, I urge you to do as you indicated you wanted to do and employ prayer to put this situation into God's hands.  At the time of my surgery I probably had at least 50 to 100 people all over the country praying for me.  It is very calming and encouraging.  I highly recommend you alert your believing friends and family that you need their prayers at this time. 

As a moderator, I feel compelled to add this disclaimer: I recommend prayer only because (a) you stated that you wanted to put this in "His loving hands" indicating that you're a believer and, (b) my experience was so positive I feel compelled to tell other believers to pray and seek the prayers of others.  I do not suggest prayer to non-believers and I only mention prayer if the poster has made their faith known via their own words. The opinions expressed by this poster (Jim Scott) are not necessarily those of the ANA.  End of disclaimer.   

I won't suggest doctors, hospitals or form of treatment.  Those are your decisions to make but along with many others, I will support you, advise you when asked and try to provide whatever information I may have to offer, when appropriate.

May you soon see even better days.  :)

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.

MAlegant

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Re: recent diagnosis
« Reply #14 on: August 18, 2008, 11:36:14 am »
Hi and welcome Maggie,
You've certainly come to the right place.  This forum has been a godsend to me and I know it will be the same for you.  Just reading about other people's experiences is so helpful.  I was very overwhelmed in the beginning; and like you, I was in great physical shape and in good health.  One thing I will say is that once I had a diagnosis I really increased my workouts.  I looked at it as "training" for surgery.  It worked pretty well and also kept me from going insane during the time between diagnosis and surgery.  I'm four weeks post-op and doing fine.  It's nice to meet you, and I look forward to lending my ear whenever you need it.
Best,
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.