Author Topic: Once You've Made Your Decision. . . . . .  (Read 7079 times)

balluff

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Re: Once You've Made Your Decision. . . . . .
« Reply #15 on: July 31, 2008, 07:33:44 am »
HI Folks,
My husband found out he has a 4mm AN on July 10th and we saw the Dr.'s at the U of Minnesota on the 29th. He is currently experiencing the ringing in his ears and a sick stomache feeling everytime he eats..Tom is in the process of making his decision as they are suggesting the middle fossa option, and are looking for sometime in Sept to do it. Any advice, suggestions would be most helpful.
Or if anyone has had worked Dr Levine or Dr.Haines at the U of M, we would like to hear your experience..

Thanks
 Tom and Andrea

ppearl214

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Re: Once You've Made Your Decision. . . . . .
« Reply #16 on: July 31, 2008, 07:53:32 am »
Hi Andrea (and Tom)... I'm sorry to hear that you all now join our ranks, but glad you are here to help learn more about the road you all now take.

In all honesty, an AN to be 4mm is very very small by standards, so don't feel "rushed" into making any decisions.  Many here are in "wait/watch" mode with far larger AN growths than that....

So, just a suggestion... .research, research, research.  Don't feel pressured into rushing into any form of AN treatment and try to research as best as you can. Another suggestion is to contact the ANA office (whether by toll -free number or by email) and ask for an information package to learn more.  Many here (myself included) share our experiences on these forums, so please take some time to do your research and ask as many questions as you can.

Most of all... please try to take a deep breath.  This certainly can be overwhelming to receive this diagnosis, but know that there are so many of us here to help you along.  Taking that deep breath is far too important. We're here to help you all as best as we can.

Please hang in there.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Once You've Made Your Decision. . . . . .
« Reply #17 on: July 31, 2008, 09:52:14 am »
Hi Tom & Andrea and welcome.

I had surgery myself, but if my AN was only 4 mm I'd very seriously look into radiation.  Just my opinion - and as we always say on this forum - treatment choice is a very personal choice, so Tom should do what is right for him.

As Phyl said, please contact the ANA about their information - it's excellent and will explain things to you in layman's terms - not doctor speak  :D

Also, as Phyl said, do your research - very important.  And make sure you find a doctor who is very experienced in treating ANs.

I personally don't know any doctors in MN who treat ANs, but I had my surgery in Illinois with a group that does both radiation and surgery.  If you're interested, please just let me know.

Just a side note - I'm traveling to Minneapolis on Thursday and can't wait to see your beautiful state  ;D

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

JulieW4

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Re: Once You've Made Your Decision. . . . . .
« Reply #18 on: July 31, 2008, 10:22:00 am »
Andrea and Tom,

I agree with Jan.  I would also look into radiation.  Many times when an AN is discovered, surgery is the only option given, but since the tumor is small I would encourage you to look into Gamma Knife (GK) or Cyber-Knife (CK).  You will find lots of info on this forum.  Take your time to research and then go with what your gut tells you is best.

Glad you found us and hope to hear back from you soon.

Julie
2.7mm X 3.7mm AN
misdiagnosed for 13 years
complete hearing loss on right side
Had Translab surgery on June 30th, released from hospital 48 hours after completion of 5 hours of surgery
BAHA abutment surgery on Oct. 31st, received processor on Dec. 4th

Jim Scott

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Re: Once You've Made Your Decision. . . . . .
« Reply #19 on: July 31, 2008, 01:40:11 pm »
Tom and Andrea:

Hello and welcome.  :)

The previous advice from AN mavens  Phyl, Jan & Julie is sufficient to guide you in the right direction as Tom seeks to decide on the best way to treat his Acoustic Neuroma.  It is relatively small.  Because Acoustic Neuromas are notoriously slow-growing I can only echo the cautions others have offered to research, consider radiation and certainly do not feel pressured to rush into a treatment within the next few weeks.   Upon my 'late' diagnosis I found myself in the position where options were severely limited and time was of the essence, but Tom isn't in that situation and he should reap the benefit of his early diagnosis.  Not that waiting is necessary a valid option, especially with his symptoms, but rushing into serious surgery may not be the most prudent path, either. Of course, the final treatment decision is for your husband to choose, with your collaboration, of course.   We'll be here to support that final decision and offer our good wishes, prayers and hopes as well as our advice and suggestions, when warranted. 

We now return to our previously hijacked thread (don't worry, it's only a misdemeanor).   :)

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: Once You've Made Your Decision. . . . . .
« Reply #20 on: July 31, 2008, 10:31:58 pm »
Sorry - hijacking this thread again.

Jim -

WOW.  Now I'm a maven  ;D  Definition, please. 

I can tell it's not a bad thing since I'm in very good company (Phyl & Julie).

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

JulieW4

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Re: Once You've Made Your Decision. . . . . .
« Reply #21 on: July 31, 2008, 11:46:55 pm »
Jim, you are keeping me busy using my online dictionary.  Maven is the third word I have looked up because of you.

Just so you know Jan -

Maven (n) A person who has special knowledge or experience; an expert.
and I also like this definition - someone who is dazzlingly skilled in any field

I think it's safe to say Jan and Phyl that we are definitely dazzling

Julie
2.7mm X 3.7mm AN
misdiagnosed for 13 years
complete hearing loss on right side
Had Translab surgery on June 30th, released from hospital 48 hours after completion of 5 hours of surgery
BAHA abutment surgery on Oct. 31st, received processor on Dec. 4th

Jim Scott

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Re: Once You've Made Your Decision. . . . . .
« Reply #22 on: August 01, 2008, 02:55:37 pm »

Sorry - hijacking this thread again.

Jim -

WOW.  Now I'm a maven  ;D  Definition, please. 

I can tell it's not a bad thing since I'm in very good company (Phyl & Julie).

Jan

As Julie's dictionary definition proves, 'maven' is a compliment.  You're welcome.  :0

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: Once You've Made Your Decision. . . . . .
« Reply #23 on: August 01, 2008, 03:21:41 pm »
Gee, Jim's compliment is very cool  8)

Now, I'm an expert and I'm dazzling!  I just knew I was in good company with this one!

Sounds much better than being told I'm droll  :D LOL

Jan - just giving Jim a hard time  ;)
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

Nancy Drew

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Re: Once You've Made Your Decision. . . . . .
« Reply #24 on: August 01, 2008, 03:44:00 pm »
Gosh,

My post really has been hijacked.  Glad so many are having fun with it.  Really, it's ok!!!

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs