Author Topic: How long between time you found out and had GK???  (Read 3763 times)

Nank

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How long between time you found out and had GK???
« on: June 23, 2013, 09:30:01 am »
I just found out on 6/12 that I have an AN.  Already saw neurosurgeon, have hearing test on 6/25 and meet with radiology oncologist on 6/26.  How long after that will it happen?

I haven't gone for a second opinion.  Should I do that too?  I trust this neurosurgeon but their GammaKnife program is only 1 year old.  But I don't want to keep going and going and going to appointments for weeks or months. 

How do you decide something so critical like this?
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: How long between time you found out and had GK???
« Reply #1 on: June 23, 2013, 03:53:55 pm »
Nank

I know that you want to act.  But that might not be the best thing to do right now.  Since the AN was just found usually the doctor is going to want to wait at least six months.   You have a base line MRI now.  Buy waiting they can do another MRI to see it is growing and if so how fact.  Most AN's grow at a very slow rate so waiting six months may be the best course of action and should be discussed with your doctor.

Good Luck
TJ

jsanders1379

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Re: How long between time you found out and had GK???
« Reply #2 on: June 23, 2013, 04:05:02 pm »
I agree on waiting 6 mo. Mine was discovered in Oct. 2012 -the repeat MRI in April showed significant growth so I went right ahead with GK- however, that 6 mo. gave me time to research all my options, get several opinions (esp. from House), and make an informed decision...
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

mesafinn

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Re: How long between time you found out and had GK???
« Reply #3 on: June 23, 2013, 04:09:57 pm »
This IS a critical decision.   Remember, this tumor is benign.  Take your time to inform your thinking.    A one-year GK program is a possibility--but there are others.  And other possible approaches.  This is a decision that can have life-altering outcomes.  Take your time, research and research and research.  And YES!  Get a second opinion.  Get a third.  It will get confusing, you will get differing insights and opinions (from family, friends, and physicians), but YOU will ultimately make the best decision for YOU.

I understand your desire to "get this behind you."  But given the ramifications, you owe it to yourself to make the best decision possible which requires patience, information, education, and all the appointments you want to avoid.

Good luck.  We're here to help if we can!
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

MDemisay

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Re: How long between time you found out and had GK???
« Reply #4 on: June 24, 2013, 10:10:49 am »
Dear Nank,

I agree with others here in as far as determining your baseline. Take time out before making a critical decision, at least get a second opinion (or a third in some cases) in all cases there maybe more than one treatment option. So the wisest choice, in my considered opinion, is to do some good research, and select your neurosurgeon from a group of top neurosurgeons or neurooncologists and carefully listen to what they have to tell you. You can choose by getting the US News and World Reports List of Top Docs It (is put out every year).

It is you who will have to live with the results of your choice for the rest of your life. You want quality here, not only the doctor you choose but the institution(major hospital as well) This is a long and hard journey! You are just at the start of it. You have been given a YELLOW FLAG! Slow down...... Do some research...we will guide you along the way if you ask us ...Look at it this way, it is a much more complex than you think, after all the part controls (your brain) controls you! Do not act fast!!

Thank you for coming here, there are a number of us here, all patients (I think) who have been down this road, you have found a wealth of information in the Acoustic Neuroma Association. There is a meeting in August in California  (it occurs semiannually) and a wealth of information from past symposiums which are also available. Good luck. Think carefully, remember once a particular option is done (surgery or Gamma Knife) there is no going back, it is up to you and your future doctor to choose wisely (mostly since it is YOU who will be the subject of whatever treatment option you take).

Most importantly YOU are not alone, PM me or others if you would like.

Mike

P.S look up "THE YELLOW FLAG" in my life I was given a great many of them it is up to us to pay attention to them- a key health diagnosis like this is one of them. The way you can look it up is by Search which is located between Help and Profile at the top of the page.
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

arizonajack

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Re: How long between time you found out and had GK???
« Reply #5 on: June 24, 2013, 07:06:47 pm »
I just found out on 6/12 that I have an AN.  Already saw neurosurgeon, have hearing test on 6/25 and meet with radiology oncologist on 6/26.  How long after that will it happen?

I haven't gone for a second opinion.  Should I do that too?  I trust this neurosurgeon but their GammaKnife program is only 1 year old.  But I don't want to keep going and going and going to appointments for weeks or months. 

How do you decide something so critical like this?

One important criterion for that decision is the extent of your hearing loss. You wrote earlier that your tumor was 1.3 cm x .07 cm but you don't have much hearing loss yet.

Even a small tumor can take your hearing from some to none in a very short time.

My AN hearing was about 90% gone when my tumor was 3mm x 4mm x 9 mm and 6 months later was 100% gone.

Watch and wait is OK if you don't mind potentially losing all the hearing on the AN side.

But if you still have significant hearing on the AN side and want to preserve it then I suggest you treat the little bugger with a bit of urgency.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0