Author Topic: SAW THE BEST, STILL LOOKING  (Read 14195 times)

rupert

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Re: SAW THE BEST, STILL LOOKING
« Reply #15 on: September 13, 2013, 05:26:13 pm »
   The best advise on this forum in my opinion has always been:  Choose experience, experience, experience.  Doctors who have done the most procedures in any of the treatment options seem to have the best outcomes.  Fear of choosing wrong, and you will not be able to make any decision.   

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #16 on: September 14, 2013, 02:29:14 pm »
Staypoz,
Thank you for the good words.  I have done so much (too much) due diligence, I have found some negatives on all these top docs.  How do you get over the fear of choosing wrong?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #17 on: September 14, 2013, 02:56:09 pm »
Actually, I am sad to say, I think I just have fear of going forward at all.  How do you get the courage?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Jim Scott

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Re: SAW THE BEST, STILL LOOKING
« Reply #18 on: September 14, 2013, 03:15:15 pm »
Actually, I am sad to say, I think I just have fear of going forward at all.  How do you get the courage?

In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".

Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".

What these aphorisms are saying is that there is always some risk in our decisions but the necessity of taking the risk must surmount our fears.  When choosing a doctor to perform AN surgery, the risk is intensified.  That means our courage to make a decision and trust that decision must be intensified.  Outside of death and taxes, there are no guarantees in life and certainly no guarantees in AN surgery outcomes.  However, many AN surgery patients do just fine.  I'm one of them.  I depended on my spiritual faith and a very experienced neurosurgeon to get me through the surgery (and later radiation).  You may wish to use other means but the surgery must be done at some point and procrastination is not the AN patient's friend.

You will be in the thoughts and prayers of many of us as you move toward making the decision you must make.  Please let us know when that happens.

Thanks.

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.

terisandler

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Re: SAW THE BEST, STILL LOOKING
« Reply #19 on: September 14, 2013, 04:34:49 pm »
Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain.  There are no guarantees about anything in life, except, as Jim stated "death and taxes".  For me, fear is counterproductive and tends to lead to negative consequences.  I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have. 
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #20 on: September 14, 2013, 07:09:43 pm »
In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".

Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".

What these aphorisms are saying is that there is always some risk in our decisions but the necessity of taking the risk must surmount our fears.  When choosing a doctor to perform AN surgery, the risk is intensified.  That means our courage to make a decision and trust that decision must be intensified.  Outside of death and taxes, there are no guarantees in life and certainly no guarantees in AN surgery outcomes.  However, many AN surgery patients do just fine.  I'm one of them.  I depended on my spiritual faith and a very experienced neurosurgeon to get me through the surgery (and later radiation).  You may wish to use other means but the surgery must be done at some point and procrastination is not the AN patient's friend.

You will be in the thoughts and prayers of many of us as you move toward making the decision you must make.  Please let us know when that happens.

These are great words. I will read them over and over.  I have to admit I am struggling.  Thanks so much.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #21 on: September 14, 2013, 07:13:47 pm »
Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain.  There are no guarantees about anything in life, except, as Jim stated "death and taxes".  For me, fear is counterproductive and tends to lead to negative consequences.  I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have.

Yes you are right.  I  can't wait forever.  Also, I was previously diagnosed with obsession and anxiety/depression, which does not help.  I will read this one over and over also.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #22 on: September 15, 2013, 12:04:29 pm »

Terisandler - I saw you also have a meningioma now.  Do you think that came from the CK?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #23 on: November 15, 2013, 04:27:52 pm »
Actually, I am sad to say, I think I just have fear of going forward at all.  How do you get the courage?

In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".

Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".

Jim

Thanks Jim you wrote very well.  I finally decided and surgery is at House next week Nov 20 with Slattery and Schwartz.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #24 on: November 15, 2013, 04:28:58 pm »
Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain.  There are no guarantees about anything in life, except, as Jim stated "death and taxes".  For me, fear is counterproductive and tends to lead to negative consequences.  I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have.

Thanks Terri.  Finally decided and its Nov 20 House with Schwartz and Slattery.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #25 on: November 15, 2013, 04:30:20 pm »
   The best advise on this forum in my opinion has always been:  Choose experience, experience, experience.  Doctors who have done the most procedures in any of the treatment options seem to have the best outcomes.  Fear of choosing wrong, and you will not be able to make any decision.

Thanks Rupert.  I had much fear.  But I chose experience and will be House on Nov 20 with Slattery and Schwartz.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #26 on: November 15, 2013, 04:35:57 pm »
V357... It appears your problem is decisional conflict which arises from risks and threats of loss. Seeing more and more expert doctors will not resolve your situation. Have you thought about counseling to give yourself some insight into
your thought processes?
Treatment is a difficult decision, but not an impossible one. Many people here in this forum found doctors they were comfortable with and went with whatever method and tools that doctor used and was best at. I know that's what I did. There is no "best" doctor for anything, there are many very good, expert, doctors for everything. No one can micro manage every possible outcome.
Any adverse outcomes from treatment are often temporary, or can be addressed medically, or we just adapt to them and get on with our lives. Good luck. By the way, you may want to look up decisional conflict.

Thanks Erie.  You had good advice for me several times.  I am finally having surgery at House on Nov 20 with Schwartz and Slattery.  Thanks so much for all your words and perspective.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

LakeErie

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Re: SAW THE BEST, STILL LOOKING
« Reply #27 on: November 15, 2013, 05:06:47 pm »
v357, You are welcome. I am glad you have made your decision and will soon have the treatment behind you. I will be interested to hear how things go from here on. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

v357139

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Re: SAW THE BEST, STILL LOOKING
« Reply #28 on: December 03, 2013, 06:22:23 pm »
Surgery was Nov 20 at House.  No facial issues, no headaches.  Got out 99.5%.  Temporary balance issues getting better each day.  Doing well.  Thank God, and all of you.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Jim Scott

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Re: SAW THE BEST, STILL LOOKING
« Reply #29 on: December 04, 2013, 02:29:34 pm »
Surgery was Nov 20 at House.  No facial issues, no headaches.  Got out 99.5%.  Temporary balance issues getting better each day.  Doing well.  Thank God, and all of you.

Congratulations! ;D  I'm delighted to have you join those of us who experienced good outcomes to our AN surgery.  May you have a rapid recovery.

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.

 


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