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Author Topic: failed CK  (Read 3324 times)

flier58

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failed CK
« on: September 17, 2010, 07:15:33 pm »
Hi Guys,
I haven't posted for a long time.  Had CK in Nov.2007 for 2 cm AN.  Everything was mostly OK until last couple of months.  I started having balance issues, nothing horrible so I decided that it just stretched nerve.  I called Chang and was told  it probably is stretched vestibular nerve but to do an MRI.  I liked stretched nerve theory so I didn't go until now because I started getting headaches in the morning.  My doctor just call me to tell me that my tumor is now 2.7 cm and blocks  the drainage of CFS.  Of course it is Friday night so I cannot get the images or read the doctors remarks.  She sent a fax to Dr.  Chang.  I'll try to get my disc tomorrow and send it to Stanford.   Oh what a nightmare!!!!
Flier58
 
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Funnydream

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Re: failed CK
« Reply #1 on: September 17, 2010, 07:52:11 pm »
That's a huge bummer.

I take it another round of CK is not in the cards?

Regrowth is always going to be the 800lb gorilla in the room for all ANers.
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Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

nanramone

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Re: failed CK
« Reply #2 on: September 18, 2010, 10:17:14 am »
Flier58 - I'm so sorry to hear this. Having had radiation four months ago today, I am telling myself that this thing will NOT continue to grow. I may be shocked some day to find out otherwise, and will deal with that if that day comes.

Again - sorry for bad news - please keep in touch.

Nancy
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free2be

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Re: failed CK
« Reply #3 on: September 18, 2010, 10:43:10 am »
Flier58,

Man, I am SO sorry to hear this news. Please keep us informed as to what Dr. Chang (Stanford, I'm assuming...there's a lot of Changs out there!) has to say and what they advise. Hang in there, I'm sure this is devastating news. You will get through whatever you have to.

Connie
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Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Jim Scott

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Re: failed CK
« Reply #4 on: September 18, 2010, 01:54:13 pm »
Flier58 ~

I'm sorry to learn about this startling AN regrowth - after 3 years.  Of course regrowth is every post-op/radiation AN patients greatest fear and I hate to see this happen, but, unfortunately, it can and does.  I know you went to great lengths to ensure you had the best treatment by one of the premier radiation doctors in the country, and now, this. Proving that there is no 'perfect' procedure - or doctor.  All AN treatments (radiation or surgery) carry inherent risks - no matter what doctor is performing it.  I hope and will pray that this re-growth can be addressed successfully, soon. Please keep us informed.  Thanks.

Jim
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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: failed CK
« Reply #5 on: September 18, 2010, 02:42:58 pm »
Flier -

Regrowth isn't common, but unfortunately it does happen.  I'm so sorry it had to happen to you.

As Jim said, you had an incredibly qualified and experienced doctor.  Sometimes sh*t like this just happens.

Hang in there; you'll get through this.

Prayers,

Jan
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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

ppearl214

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Re: failed CK
« Reply #6 on: September 18, 2010, 04:19:39 pm »
Flier

First, you have been sorely missed!

2nd, you didn't note the kind of doctor that called you to tell you this growth difference and noting that its blocking CSF.  I'm with you... waiting over a weekend to reach any doctor plain-old stinks...... let's see what Chang says and plu-eeeeeze keep us updated what he says!  As an AN and a CK'er, you KNOW I would like to know.

Hang in there. I know easier said than done but please try your best.

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

flier58

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Re: failed CK
« Reply #7 on: September 18, 2010, 05:18:09 pm »
I just got my CD and sent them to Stanford.  the MD reading my scans here in Chicago is a radiologist.  I wouldn't worry much about what he says if it wasn't for accompanying symptoms.  There is a lot of med speak that I don't understand but my headaches are real, balance issues are very detectable (before I didn't even percive them), some cognitive issues (memory, sequencing tasks) etc.  I certainly hope that Dr.  Chang will tell me not to worry....
But I may have to make decisions as to further game plan....so here we are again
I don't feel sorry for going with CK.  I'm just angry that I have to deal with this again, that the outcomes can be very unpleasant.
I know my rambling doesn't make much sense but AN doesn't make any sense.
I will keep you posted.  I did not write but I kept up with your stories because you are a great bunch of guys.
Flier
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ppearl214

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Re: failed CK
« Reply #8 on: September 18, 2010, 06:58:42 pm »
Flier

Please keep us updated.  I'm going to follow this very closely and hope Dr Chang can provide answers quickly and hopefully, with postiive results.

Keeping all appendages crossed for good luck and good wishes.

Phyl
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"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: failed CK
« Reply #9 on: September 18, 2010, 07:37:41 pm »
Flier -

I didn't know you were here in Chicago - or did, I?

Where did you have your MRI?  Reliable place, I assume?

And did you get a CD of your MRI to view yourself?

Jan
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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
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