Friday, June 4, 2010

Seeking a CURE for my Cushings Disease

Well, I had Gastric Bypass surgery this past Oct. 23, 2009 because all of my doctors told me that I was FAT and that Cushings Disease is too RARE... 3 weeks later, I was finally diagnosed with that RARE disease...

So, after many more tests, a MRI, 2 CT Scans, the scary IPSS procedure (that was undeniable), I had Transsphenoidal Pituitary Surgery at UAB's Kirklin Clinic with Dr. Kristen Riley on April 7, 2010. Sad to report, it was unsuccessful.

As of yesterday, I have changed doctors. Dr. Bill Ludlam is my new Endocrinologist. He is a Cushings/Pituitary Disease Expert. He practices at Swedish Hospital in Seattle, WA...all the way across the country.

I am tentatively scheduled for a week of intense testing beginning June 28th. Then, if all goes as expected, Dr. Mayberg will perform my second pituitary surgery the following Tuesday, July 6th...Hopefully, this will give me the 'cure' that I have been begging/waiting for.

29 comments:

  1. I hope this is your cure. My kids & hubby opted to bypass the second pit surgery & have a BLA.

    ReplyDelete
  2. Best of luck! If you want to hook up with other Cushings patients...check out magicfoundation.org. they are tied into the listserv's etc. and have a group of adult Cushings people. Stay strong!
    Georgia Mom- way too hot already!

    ReplyDelete
  3. may the blessing be always with you!!.................................................................                           

    ReplyDelete
  4. 一個人的價值,應該看他貢獻了什麼,而不是他取得了什麼............................................................

    ReplyDelete
  5. 人類的聰明,並非以經驗為依歸,而是以接受經驗的行程為依歸。..................................................

    ReplyDelete
  6. 一個人的際遇在第一次總是最深刻的,有時候甚至會讓人的心變成永遠的絕緣。......................................................................

    ReplyDelete
  7. 不會從失敗中找尋教訓的人,成功之路是遙遠的。.................................................

    ReplyDelete
  8. 生存乃是不斷地在內心與靈魂交戰;寫作是坐著審判自己。..................................................

    ReplyDelete
  9. OMG! There IS hope! I'm 14 years old and have had every single one of these symptoms since I was a little girl. The large, round, puffy face; the stretch marks on my stomach, arms, and thighs;the hump on the back of my neck; a lot of weight gain; EVERYTHING!!!!! Everyone says that I'm just fat and lazy and I need to work out, and I try to, but ITS NOT WORKING!!! I'm embarrased to go anywhere, I have grown my hair long so I can hide my nech and shoulders, I wear the baggiest clothing ever because I look like I'm pregnant or something, and I'm afraid to make friends because they will find out about the stretch marks and the hump even more than they already do. It's really hard to change for gym class in the locker rooms without anyone stopping and staring, pointing and laughing and thowing things at me, staring rumors that I'm pregnant or other really stupid high school stuff. There are tears streaking down my puffy face and I'm starting to think that there might be hope for me! Is there? Can you have this alien ruling your body, this Cushing's Syndrome when your a teenager? Please help me! It seems like NO ONE understands - doctors just say I'm fat and need to accept it, but I won't. I'm not lazy, and there is something wrong with me.

    ReplyDelete