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MelissaTX

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

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Hi everyone. I have been thinking about Cushing's Awareness Day.

 

I want to create a list to show how many of us struggle with multiple surgeries. If you would like to participate, can you please reply below?

 

Please give your name, location, date of each pituitary surgery, and date of BLA. Please give us your real name, or I'll give you a fake name. I believe it will humanize us as patients when we use first names. I will just use your name and general location, maybe state or province or country.

 

I will format all the entries and then post the nice list that I hope we will all blog and share on April 8th. Hope you will participate. It is really important to educate our friends and family about how common it is to need multiple surgeries. Thanks!

 

I'll start:

 

 

Melissa, Texas. Pituitary surgery #1: June 2009. Pituitary surgery # 2: March 2011.

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Vicki, Buffalo, NY. Pituitary surgery #1: October 2009. Pituitary surgery # 2: April 2010. BLA soon to come.

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Melissa, Florida. Pit surgery #1: March 2009. Pit surgery #2: December 2009. BLA to come?

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Brenda, Alberta, Canada: Pituitary surgery May, 2007, BLA May, 2007

 

Good luck with your list. It may help people to realize just how many of us there are!

Edited by Juneau

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Pat, California. Pituitary Surgery #1: August 2000. Pituitary Surgery #2 December 2007. Currently testing for surgery #3.

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This is a great list, everyone. There are another 20 or so posted on the facebook cushing's page. That's 25 people that I can point to and say, "see? I'm not the only one with a "reoccurrence"," or "look at all these people who suffer for years and years, like me." both are very powerful messages.

 

I hope more will add info to the list.

 

Also, be sure to add radiation and other treatments, too, if you wish. Also, if you are testing still, please end your entry with that.

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Cyndie M, New Jersey, Pituitary 1-09-2009 Upcoming BLA 4-28-2011.

 

This is a great list, everyone. There are another 20 or so posted on the facebook cushing's page. That's 25 people that I can point to and say, "see? I'm not the only one with a "reoccurrence"," or "look at all these people who suffer for years and years, like me." both are very powerful messages.

 

I hope more will add info to the list.

 

Also, be sure to add radiation and other treatments, too, if you wish. Also, if you are testing still, please end your entry with that.

 

Yea I think there stats of 80% initial success rate is MUCH LOWER then what they fudge the numbers to be...

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Kim S. , Pennsylvania- Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.

In testing since Oct 2010 for Cushings.

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Jenny, Iowa. Pituitary Surgery #1- May 2008. Pituitary Surgery #2- April 2009. Currently considering a BLA vs. pituitary surgery #3.

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Tanya Buffalo, NY. Pituitary surgery #1 - February 2010, currently seeking re-diagnosis

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Denise Potter Dallas,Oregon

 

2003 pit surgery Vanderbilt

2004 canceled pit removal after screws where in (I was in pre-op) Vandy

2004 Stereotactic Radiosurgery- Vandy

2005 Right half of Pit removed - OHSU

2005 BLA - OHSU

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Yup. I will merge the lists closer to April 1st. I'll post it in both places so everyone can post to emails, blogs, FB, wherever.

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Kate, New Jersey

 

Pit Surgery #1 - Jan. 2007 (Failed)

Pit Surgery #2 - July 2007 (Total Pit Removal; Failed)

CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)

Open BLA with 18" incision - Sept. 11, 2008

Gamma Knife Radiosurgery - Oct. 2009

 

No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)

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michaela, toronto, pit surgery 1 june 2005, pit surgery 2 jan 2008, pit surgery 3 july 2008, bla july 2009

Edited by michaela

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