Author Topic: Husband Newly Diagnosed with very large tumor  (Read 13360 times)

ppearl214

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Re: Husband Newly Diagnosed with very large tumor
« Reply #30 on: July 18, 2010, 07:22:11 pm »
Jan and Phyl - now I'm jumping in....my AN was 2.3 on May 17, and Dr. Lunsford called it "small".

What's in a word?   ;)

in this case, "size does matter...."

As defined by the ANA:

http://www.anausa.org/what_acoustic_neuroma.shtml


"Tumors are typically described as small (less than 1.5 cm), medium (1.5 cm to 2.5 cm) or large (more than 2.5 cm)."

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: Husband Newly Diagnosed with very large tumor
« Reply #31 on: July 18, 2010, 07:24:07 pm »
It's a whip, not a stick LOL

Phyl, I think you should make that your profile saying  :D

Thanks for the size clarification.

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

nanramone

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Re: Husband Newly Diagnosed with very large tumor
« Reply #32 on: July 18, 2010, 08:36:30 pm »
hi - yes, I know the definitions by size...I was just happy when he called the 2.3 cm thing small, even if he should have said medium sized. I felt better thinking of it as small. Silly, I know....

Larry

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Re: Husband Newly Diagnosed with very large tumor
« Reply #33 on: July 18, 2010, 08:43:50 pm »
Correction Jan, it's a feather duster, bu back on topic -

I'm glad that there was an error cm v's mm but doesn't it prove one major point in this whole episode of an Acoustic Neuroma - THAT IS - TO ALWAYS GET A SECOND OPINION (at least).

Over the years, as Jim has said, we have seen countless errors and poor medial advice given. We have also seen terrific outcomes so all is not lost. Iguess, th major thing here is that AN's are very different t the common cold and do require special medical skills. he next step in treatment for a 12mm AN is very differentto somthing of XXXL size.

This is another case of this forum helping so well done to everyone and for "hubby" going forward.

laz


2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

satman

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Re: Husband Newly Diagnosed with very large tumor
« Reply #34 on: July 19, 2010, 06:15:25 am »
sorry i'm late on the conversation been on vacation, when i  first read this post my heart hurt just thinking of the road that was ahead of him.
thank god it was inaccurate.
« Last Edit: July 19, 2010, 11:29:49 am by satman »
kicked my little 8cm buddy to the curb-c ya !

Doc

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Re: Husband Newly Diagnosed with very large tumor
« Reply #35 on: July 19, 2010, 10:38:43 am »
Wonders when Phyl's gonna whip out the ol' "Get back on topic" stick! lol
:)

NOW! ;)

Ok, folks...... ahem.....

Back on topic! And its a whip, not a stick!
Phyl

Blah Blah Blah - So Scary!

 :P
Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

ppearl214

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Re: Husband Newly Diagnosed with very large tumor
« Reply #36 on: July 20, 2010, 05:02:30 am »
um, folks....  let's get back to the support here... not the yada-yada's....... 

Also glad to hear that the tumor is much smaller than originally reported. Many treatment options available for the size reported and here's hoping the process is as easy as possible.

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

sbrn

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Re: Husband Newly Diagnosed with very large tumor
« Reply #37 on: July 22, 2010, 04:41:34 pm »
Wow, the last few days have been a whirlwind.  My husband took the news very well.  I think he may have been expecting something.  We were able to locate his military health records from 1999, and all the hallmark signs were there.  Unilateral hearing loss, tinnitus, and fullness.  Everything happens for a reason though.  Had it been found then, it more than likely would have ended his military career.  Now with only two years until retirement, he should be able to finish out his 20.  I'm just glad that we're far enough away from a military installation that he has more options in choosing where to be treated.

Since the last post, we've already had our first appt. with a neurosurgeon who's very well known in Nashville.  Because of his young age, their recommendation is surgery.  We'd pretty much come to that conclusion ourselves from what we'd read online already.  There's just not enough long term data out there for the radiation option and the hints of possible recurrence and malignancy in the radiation field are a little scary.  My husband wouldn't be comfortable with leaving it in there anyway.  He really wants to just get it out at this point.  We did learn that it's just starting to emerge from the canal, so I think we caught it at the right time.  We've been referred to otolaryngology now for a full hearing workup to determine the best approach.  Obviously with being in the military, my husband isn't keen on the idea of 100% hearing loss in that ear.  We've also requested a second referral to a neurotologist at Vanderbilt for another opinion.  If there's anybody on here who is active duty military, we'd love to hear from you!  We're trying to figure out what if any impact this will have on his ability to continue active duty service. From what we've read online, everything points to the MEB process.

That's  it for now.  Keep the advice coming!  It's helping us both!
Husband diagnosed 7/10 with 1.2 x 1.1cm AN
Translab 26 Oct 10
Baptist medical center Nashville TN

moe

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Re: Husband Newly Diagnosed with very large tumor
« Reply #38 on: July 22, 2010, 07:52:47 pm »
Glad to hear that things went well with the news.

I don't live in your area, so can't give you any help there, but so glad you have the option of going out of network to get the bugger out.

Let us know how things progress :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Jim Scott

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Re: Husband Newly Diagnosed with very large tumor
« Reply #39 on: July 23, 2010, 12:29:50 pm »
sbrn ~

Thanks for the update.  I'm not in the military and I'm a long way from Tennessee so I'll leave any pertinent information on those issues to others who can respond with useful information for you.

However, I'm glad to learn that (a) your husband took the AN diagnosis well and, (b) he's made a treatment decision (surgery) and you're moving ahead with that.  My only advice is to remain focused on banishing the tumor and don't get bogged down with the 'what-if's' to the point where you're second-guessing every decision.  You folks seem to be pretty composed and that kind of attitude will be a great help in the weeks to come, as your husband prepares for the surgery and recovery. Never forget that, as so many of our members happily state: 'there is life after an acoustic neuroma'.   It may be slightly different in some respects, especially if there is a unilateral hearing loss, but eventually, this too, will recede in life's rear-view mirror and things will return to normal. 

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.

Lizard

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Re: Husband Newly Diagnosed with very large tumor
« Reply #40 on: July 24, 2010, 09:27:40 am »
Thank you for the update, I was curious how your husband took the news.  I understand about getting that booger out of there, I had that same feeling.  I didn't like walking around with this foreign object inside me. Surgery is a personal decision and if that's the way he wants then he's won half the battle.  The decision can be very difficult, so now that he's past the first hurdle I want to make a suggestion (not a Dr. just passing on my experience).  Since he is young and only has 2 years left in the military why not watch and wait for at least 6 months or until he has his next MRI and then decide.  If its not growing quickly you may not need to do surgery until after he retires.
its just a thought.
Keep us posted,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
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sbrn

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Re: Husband Newly Diagnosed with very large tumor
« Reply #41 on: July 24, 2010, 01:57:38 pm »
Jim, thanks so much for the encouragement!  Thank you Maureen & Liz also!  In response to Liz' suggestion of waiting, they really didn't encourage that b/c it's starting to emerge from the canal now.  Besides, it's driving my husband crazy just thinking about it and knowing it's in there.  He actually feels like the ringing has intensified, which I'm sure is just b/c he now knows why he has the ringing.  Besides all that, we'd much prefer going through the general channels instead of only having the option of the VA.  Once he retires, that's the only route to take.
Husband diagnosed 7/10 with 1.2 x 1.1cm AN
Translab 26 Oct 10
Baptist medical center Nashville TN

Lizard

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Re: Husband Newly Diagnosed with very large tumor
« Reply #42 on: July 25, 2010, 10:33:54 am »
hi, I just had to put my two cents in...didn't realize that he had to use the VA after he retires....we'll get that booger out of there!
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt