And It's About Time There Was Some Support For Cushing's!
My daughter, Kelsey, is 18 years old and has Cushing's.
Her story is much like so many others: a dozen, or so, local doctors that told us nothing was wrong, while we knew in our hearts something was definitely very wrong. I had never even heard the words Cushing's disease and firmly believe that we would still be looking for someone to listen to us if not for this website.
After reading and researching, we traveled to a specialist in L.A. (we are from Denver). He thought Kelsey was cyclical, but probably had Cushing's. He sent her home with a variety of tests. After a few months of testing and a MRI showing something on the left side of her pituitary, Kelsey had transphenoidal surgery in L.A. (Oct. '06). She definitely crashed after surgery, and for a couple months we were hopeful there was a cure. She lost 10 pounds in the first 2 weeks and felt better than she had in a long time. But then symptoms slowly began to return (weight gain, irregular periods, bruising, round face). Another MRI indicated a growth on the right side of her pituitary, so she had another surgery with the same surgeon in Feb '07. We knew immediately that it was not successful.
For 6 months Kelsey tried meds (ketoconazole and metyropone) with limited results. The meds seemed to prevent her symptoms from worsening, but they did not really improve much.
In August 07 we spent a week at NIH, but all tests came back normal. Kelsey was clearly still cyclical.
In January we visited another specialist in Seattle. He is in-network with our insurance, while our L.A. doctor and surgeon were not. As you can imagine, this has been a tremendous financial drain, so that was a welcome change, but even more importantly, the doctor had been highly praised by other cushies. Kelsey was high on several tests while in Seattle, but never on UFCs. She has continued testing at home, and we finally got a high UFC result. I don't know how many more will be needed before Kelsey can move onto the next step.
Unfortunately, with 2 failed pituitary surgeries, Kelsey's options are all a little scary. One option would be a 3rd pit surgery. She has only about 1/3 of her pituitary remaining, but remarkably, needs no replacement hormones. It is pretty certain that another surgery would severely impact her, possibly making her infertile with a completely non-functioning pituitary gland. This would be true of radiation, as well, and that can take a very long time to work.
The last option is a BLA. Kelsey is all for this, but it scares me. I hate for her to have perfectly good adrenal glands removed, though I think it is worse to see her daily struggle, sadness, and decline of quality of life. The doctor seems to lean toward a BLA and I very much value his expertise. We have a phone consult with him soon and we are both anxious to hear his opinion on the timeline and the next step.
In retrospect, Kelsey began having symptoms 4 years ago, and we have been actively seeking a cure for 2 years. Unbelievably, this sounds like one of the easier scenarios, though it is far from over. This is a hideous, awful disease and I am amazed and humbled by the strength and compassion of those who are suffering from it. I have no medical background at all. In fact, I teach 3rd grade, and my family jokes that I have the best 3rd grade education around. But if I can be of help to anyone, feel free to contact me, and I will update Kelsey's bio if (when?) we move forward. I am praying HARD for all Cushies!
Diane
We went to Seattle in mid March (08), expecting to have an IPSS test performed, then moving on to a BLA the following week. Her IPSS results came back so definitely showing a left sided source (though the MRI did not concur) that Dr. Ludlam said he thought it was worth trying a 3rd pituitary surgery with his surgeon, Dr. Mayberg, in whom he has so much faith.
Kelsey had her 3rd pituitary surgery on April 1, 2008. Dr. M said that by making very, very thin slices through her pituitary (though not removing these slices), and flipping them over, so to speak, he finally uncovered a small tumor. He said it was a "squirter" and had to be suctioned out, so there was nothing abnormal in pathology. He felt fairly confident that he had found the offender, but said we would have to wait to see what her cortisol levels did in the couple days following surgery. Dr. L had said that a cortisol level lower than 2 is ideal. Well, eight hours after surgery Kelsey's cortisol was at .9! We were so thrilled and grateful.
Now almost 3 months post-op, she has made wonderful progress. She has lost 20 pounds, seldom has headaches, doesn't have the muscle and bone aches she was getting, no bruising, and feels really good. She now needs thyroid meds, and probably growth hormone, but we feel that's a great trade for a cushings-free life. She has had her period since surgery, which the doctors say is a very good sign that her fertility is intact.
So it's off to college in the fall for Kelsey, which we were quite doubtful would happen this year. I can tell you we are one grateful, blessed family. Please contact me if I can answer any questions, or be of help to anyone.
