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Add your name; Help us show how difficult Cushing's is to cure


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67 replies to this topic

#41 Nicci

 

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Posted 19 February 2012 - 05:11 PM

Nicole Velardi, Tannersville PA

1st pit surgery: full crainiotomy 8/4/2010. SACRED HEART HOSPITAL
2nd pit surgery: Transphenoidal Sinus Surgery 4/12/2011 THOMAS JEFFERSON UNIVERSITY HOSPITAL, FOR NEUROSCIENCE
3rd pit surgery: Lindic Radiosurgery 7/28/2011 THOMAS JEFFERSON UNIVERSITY HOPSITAL ONCOLOGY/RADIOLOGY



Still fighting the good fight. Every day is a struggle. People need to realize, DOCTORS ESPECIALLY, that removal of the tumor does not equal a 'cure'!!!

Good luck my fellow cushers! XOXO
STAY STRONG!!

#42 MaryO

 

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Posted 19 February 2012 - 05:16 PM

From a non-board member who wanted to be included:

Carrie, Idaho 33yrs old. Right Adrenal removal Aug 2010.

#43 fabbi

 

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Posted 19 February 2012 - 05:54 PM

(New)
Fabiana, New Jersey

Pit surgery #1 July 2004
Pit surgery #2 October 2011
BLA January 2012

#44 MaryO

 

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Posted 19 February 2012 - 06:23 PM

And...

Jenny, Louisiana

43yrs,, 1st pituitary surgery 2000, 2nd pituitary 2002, gamma knife radation 2003 to the pituitary. sent me to little rock ark in 2004 3rd pit surgery with spinal leakage then a repair to come back to louisiana and spinal leakage again, 3 surgeries to pack a hole and then 4th surgery removal of the whole pit. 2005 both adrenals were removed.

#45 jolken

 

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Posted 19 February 2012 - 07:26 PM

Olga, Sonora, California
Pituitary Surgery #1 @ Stanford Hospital, Palo Alto, CA on May 4, 2011

#46 larlarmil

 

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Posted 19 February 2012 - 07:27 PM

Lauren, Pennsylvania: Pituitary Surgery #1 (January 2011), currently awaiting next treatment for recurrance of Cushing's.

#47 michelletm

 

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  • Interests:I like to cook and bake if I am feeling good but sometimes I tend to forget I have something on the stove. I gues that is my Post Cushing's Memory loss . I also like to spend time with my 13 year old son Cody and my husband Rick who had stuck out this entire Cushing's ordeal with me. I am currently testing for a re occurrence of Cushing's . My levels are off and my body is turning back into the "Cushing" look..

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Posted 19 February 2012 - 07:30 PM

Michelle N. Panama City, Fl

Pituitary Surgery #1 (entire removal of pituitary) January 2006 at U.A.B.
Being tested for Surgery #2 or Gamma Knife Radation
Cushing's Symptoms back along with elevated 24 hour UFC and ACTH, even though I do not have a Pituitary gland
Testing, Testing, Testing AGAIN, MRI last week showed no tumor but have been off replacement Corteff since
2-1-12 without Adrenal Crisis, so, I have a tumor making it somewhere :/...They are still looking..

#48 Jen1978

 

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Posted 19 February 2012 - 07:47 PM

Jennifer- Massachusetts. Pituitary Surgery with CSF Leak & BLA in 2005 At OHSU. Have rest tissue...more testing for now.

#49 sydney2000

 

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Posted 19 February 2012 - 07:48 PM

Barbara, West Islip, NY pit surgery Dec 9 2011.still symptomatic. :(

#50 karenY

 

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Posted 20 February 2012 - 12:52 AM

Karen- Mother of 13 yr. old -Pituitary surgery Aug 2011

#51 MaryO

 

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Posted 22 February 2012 - 04:16 PM

New

MaryO, Virginia
Pituitary tumor removed by transphenoidal resection at NIH (Dr. Oldfield) Nov 3, 1897
Fall 1999, learned that pituitary gland was shutting down. Becoming adrenal insufficient because of it.
2001, Growth hormone numbers show deficiency
September 2004, Went back on daily Cortef
December 6, 2004, started on daily Growth hormone injections
April 27, 2006, argenine (growth hormone test) retested
April 28, 2006, diagnosed with kidney cancer (renal cell carcinoma). Did GH help it grow?
May 9, 2006, entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes.
Now, growth hormone is still low. Since I am over 5-years post op on the cancer, I could take it again but am leery.


~~~~

From Facebook:
  • Jenny, Louisiana 43yrs,, 1st pituitary surgery 2000, 2nd pituitary 2002, gamma knife radation 2003 to the pituitary. sent me to little rock ark in 2004 3rd pit surgery with spinal leakage then a repair to come back to louisiana and spinal leakage again, 3 surgeries to pack a hole and then 4th surgery removal of the whole pit. 2005 both adrenals were removed.
  • Cecilia, South Africa, Pituitary surgery May 2011.
  • Barbara, West Islip, NY pit surgery Dec 9 2011
  • Margie Reed-41, Venus, TX- pit surgery 08, diagnosed with Cushings in 09, waiting for date of pit surgery #2.
  • Ashley, National Institutes of Health, Bethesda,Maryland. Pit surgery on August 4,2001, spinal leakage repaired August 8,2001 and several day long stay in ICU started on August 10,2001. I was 12 years old.


#52 JenS

 

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Posted 23 February 2012 - 02:17 PM

Jennifer, New Jersey
Pituitary Surgery 2004
Bilateral Adrenalectomy 2006
Radiation in the future for highly elevated ACTH levels.

#53 betseebee

 

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Posted 27 February 2012 - 07:05 AM

New:

Elizabeth, California.

Pituitary surgery #1, 2009.
Pituitary surgery #2, 2010.
In remission but constantly testing for a recurrence.

#54 mertie

 

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Posted 28 February 2012 - 01:40 AM

Mary, Michigan
Pituitary surgery, 2007 with Dr. Jho
Thought I had a cure, but still sick, not rediagnosed,
No insurance and can't afford to test,
MRI's appear clear

#55 zippee

 

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Posted 26 March 2012 - 04:58 PM

Alicia from Alberta, Canada. Pituitary surgery Febuary 2002. BLA date to be determined.

#56 3v3

 

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Posted 26 March 2012 - 05:02 PM

Eve, Sugar Land TX. I am just diagnosed (today in fact!) but have struggled with symptoms for about 8 years. Awaiting surgery to remove the right adrenal & its nasty little tumor---and hopefully that will be the first step back to the old me!

#57 SusanM

 

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Posted 26 March 2012 - 06:08 PM

Melissa of TX, thanks for doing this work and pulling this list together. As I read through it, the list has a powerful impact to the reader. Having to have a list like this makes me sad (that any of us are sick), but doing so helps the world understand more about who we are.

I elected not to participate for personal reasons, but encourage others to do so.

One minor thought....pituitary adenomas are not the only thing that causes Cushings. Pituitary Hyperplasia is the rare form of this disease and thought you may want to update the definitions portion to include pituitary hyperplasia along with pituitary adenomas.

#58 AUNTSHA

 

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Posted 26 March 2012 - 07:56 PM

Sharon from Long Island-Pituitary Surgery Nov 2007 Mt Sinai Hospital New York City- in remission.

#59 MaryO

 

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Posted 26 March 2012 - 09:17 PM

Thanks, everyone. Melissa will update the list on her blog on April 8 - Cushing's Awareness Day. I'm keeping my version updated whenever new names come up so there's not quite so much work in April :) http://cushie.info/i...1002&Itemid=127

Susan, there's info about Pituitary Hyperplasia on the original Definitions list that Melissa copied that info from. http://www.cushings-...definitions.htm I've added that to my list per your suggestion.

Thanks!

#60 SusanM

 

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Posted 27 March 2012 - 02:40 AM

Thanks, MaryO. My apologies, I didn't go back to the original but read just what was in this thread.




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