Cushing’s Awareness Challenge: Day 10

robin-tests

Gee, I’m an underachiever. LOL I only had one IPSS and one pituitary surgery.

While I was at NIH, my MRIs still showed nothing, so they did an Inferior Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors.

I could not move during this test or for several hours afterwards to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located.

Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they didn’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to.

During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

maryo colorful zebra

4 Responses

  1. I totally thought I was going to die during my surgery too. I couldn’t see anything past that point in life. I too write letters to all my family including my young son, 3 at that time, for his wedding gradation etc. I was at peace with the idea even though it made me sad. Obviously I didn’t die but the next few months and even a year were rough! My endo doc said it’s a marathon and not a sprint. I totally expected to feel better after surgery and be completely healed right away. What followed was far worse that what I could ever imagine. I’m happy to say that two years ago today I had my surgery and am in remission. I have lost 70 pounds and have my energy back. I feel for anyone who has this disease. I cried out for help for a long time before finally getting diagnosed by mistake. Hang in there Cushies and keep fighting!

  2. I have had my Left Adrenal gland removed on 1st April for an Adenoma 2.5cm. I am generally feeling much better, but still not sleeping very well, my fingers and ankles are particularly painful at present. I think I had Cushings for about 5 years before diagnosis, but once I got referred it only took 6 months. I am taking Hydrocortisne 20mg and awaiting a short Synacthen test. After reading peoples stories I think I was a mild case, although it has affected my life. I was dismissed from my nursing job due to ill health and gave up as musical director at church due to lack of energy. Now I am hoping for improved healing and thinking how I can use this experience. Thanks to everyone for all your support . Carolyn.

  3. Anyone know of a doctor who specializes in Cushing’s around Pittsburgh PA?

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