Jump to content

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


Recommended Posts

  • Member of the 1000 Post Club

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

  • Replies 67
  • Created
  • Last Reply

Top Posters In This Topic

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

Link to comment
Share on other sites

  • Member of the 1000 Post Club

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

  • Over 2000 Posts

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

  • Member of the 1000 Post Club

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

  • 3 weeks later...

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...