I am 40 years old and recovering from Cushing’s.
I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.
I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.
I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.
However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.
It would have been easy for me to give up, but that is not the life I wanted!
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Nov 11, 2013 @ 09:43:03
Your story touched me personally because I was also at Emory in January for the TSS – my second, to remove the remainder of the gland. I also ended up with a CSF leak and was back in February to patch that up. And the 80 lbs weight gain…jeez. The aches and pains, check, check! Are you in Atlanta? We are starting a support group / possible Atlanta chapter of the CSRF. If you are interested you could e-mail me at blueofnoon@hotmail.com. We had our first meeting last weekend and had 6 current/former Emory patients, a couple of spouses, the founder of a pediatric Cushing’s group, and a rep from Corcept.
Take care!
Leslie