Member of the 1000 Post Club MelissaTX Posted March 7, 2011 Member of the 1000 Post Club Report Share Posted March 7, 2011 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. Link to comment Share on other sites More sharing options...
gmcook3 Posted March 7, 2011 Report Share Posted March 7, 2011 Gina, Georgia. Pituitary surgery #1: March 2009. Bilateral Adrenalectomy: October 2009. Link to comment Share on other sites More sharing options...
Vicki Posted March 7, 2011 Report Share Posted March 7, 2011 Vicki, Buffalo, NY. Pituitary surgery #1: October 2009. Pituitary surgery # 2: April 2010. BLA soon to come. Link to comment Share on other sites More sharing options...
mbinig Posted March 8, 2011 Report Share Posted March 8, 2011 Melissa, Florida. Pit surgery #1: March 2009. Pit surgery #2: December 2009. BLA to come? Link to comment Share on other sites More sharing options...
jellybean3409 Posted March 8, 2011 Report Share Posted March 8, 2011 Jamie, Washington State. Pituitary surgery #1: March 2010. Pituitary surgery #2: April 2010. Link to comment Share on other sites More sharing options...
Juneau Posted March 8, 2011 Report Share Posted March 8, 2011 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! Link to comment Share on other sites More sharing options...
drc1218 Posted March 8, 2011 Report Share Posted March 8, 2011 Christy, New Mexico. Pituitary surgery November 2010. Considering BLA Link to comment Share on other sites More sharing options...
patvytpit Posted March 8, 2011 Report Share Posted March 8, 2011 Pat, California. Pituitary Surgery #1: August 2000. Pituitary Surgery #2 December 2007. Currently testing for surgery #3. Link to comment Share on other sites More sharing options...
Nan Posted March 8, 2011 Report Share Posted March 8, 2011 Nan, New Jersey, Pituitary Surgery, October 2010 Link to comment Share on other sites More sharing options...
esg31 Posted March 9, 2011 Report Share Posted March 9, 2011 Dan, Delaware. Pituitary Surgery #1 August 2009. Pituitary Surgery #2 February 2011. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club MelissaTX Posted March 9, 2011 Author Member of the 1000 Post Club Report Share Posted March 9, 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. Link to comment Share on other sites More sharing options...
Over 2000 Posts aautomo884 Posted March 9, 2011 Over 2000 Posts Report Share Posted March 9, 2011 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... Link to comment Share on other sites More sharing options...
Over 2000 Posts LilDickens Posted March 9, 2011 Over 2000 Posts Report Share Posted March 9, 2011 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. Link to comment Share on other sites More sharing options...
Over 2000 Posts casperslove Posted March 9, 2011 Over 2000 Posts Report Share Posted March 9, 2011 Kay, New Jersey, 1st & 2nd pit surgery June 2008 - in remission Link to comment Share on other sites More sharing options...
jlsrose Posted March 9, 2011 Report Share Posted March 9, 2011 Jenny, Iowa. Pituitary Surgery #1- May 2008. Pituitary Surgery #2- April 2009. Currently considering a BLA vs. pituitary surgery #3. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club TanyaW Posted March 9, 2011 Member of the 1000 Post Club Report Share Posted March 9, 2011 Tanya Buffalo, NY. Pituitary surgery #1 - February 2010, currently seeking re-diagnosis Link to comment Share on other sites More sharing options...
Over 2000 Posts radtravler Posted March 10, 2011 Over 2000 Posts Report Share Posted March 10, 2011 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 Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club MelissaTX Posted March 13, 2011 Author Member of the 1000 Post Club Report Share Posted March 13, 2011 16 of us listed here. I'm going to check how many reported in on the FB side... Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club MelissaTX Posted March 13, 2011 Author Member of the 1000 Post Club Report Share Posted March 13, 2011 24 listed in the facebook site. That's 40 of us. Can we get that number up to 50? Link to comment Share on other sites More sharing options...
patvytpit Posted March 13, 2011 Report Share Posted March 13, 2011 Can you add the FB info here so we can see it all together? Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club MelissaTX Posted March 14, 2011 Author Member of the 1000 Post Club Report Share Posted March 14, 2011 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. Link to comment Share on other sites More sharing options...
Cate Posted March 15, 2011 Report Share Posted March 15, 2011 Cate, Georgia. Pit surgery #1 and 2 -- August 2009. In remission. Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club Fairley Posted March 16, 2011 Member of the 1000 Post Club Report Share Posted March 16, 2011 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.) Link to comment Share on other sites More sharing options...
doglovr Posted April 2, 2011 Report Share Posted April 2, 2011 Melyssa, Colorado. Pituitary Surgery # 1: August 2009. Currently testing again. Link to comment Share on other sites More sharing options...
michaela Posted April 3, 2011 Report Share Posted April 3, 2011 michaela, toronto, pit surgery 1 june 2005, pit surgery 2 jan 2008, pit surgery 3 july 2008, bla july 2009 Link to comment Share on other sites More sharing options...
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