“Reporting for duty”, Jess said, as the three of us arrived at the check-in counter at Mayo yesterday morning. She was eager to get this last lab (for now) done! The test was called a CRH test http://patients.uptodate.com/topic.asp?file=adrenal/6529From the patients.com site: “it can be difficult to distinguish Cushing's disease from ectopic ACTH secretion. One test that has been used to distinguish between the two disorders is assessment of the ACTH response to the administration of corticotropin-releasing hormone (CRH) [1]; patients with pituitary Cushing's disease respond while those with ectopic ACTH secretion do not.”
For this test, she had to have an IV line placed. Every muscle in her body bursts into action when needles are present. She did a great job holding still and trying to relax. Once the IV was in, she was pretty much good to go. Over the next hour and a half nurse Julie (who we love), did a series of blood samplings/injections every 15 minutes. Once that was done, we headed down to the cafeteria for some breakfast. All I can say is that Jess can "put away" more food than my big, burly man, and still maintain her cute little figure. It's just not fair (ha ha)!
Some of you have asked about the correlation between the Cushing's Disease and the pituitary legion. I found a really easy to understand explanation on; http://www.brain-surgery.com/pituitary.html It basically says the following: Cushings Disease: "This syndrome is caused by tumors on the ACTH (Adrenal Corticotrophin Hormone) secreting cells of the pituitary gland. Patients with this problem develop fat deposits in strange places (Moon face, Buffalo hump on the back of the neck), spontaneous scarring of the skin along the belly that look striated, pimples in adults, high blood pressure and elevated body temperature. These tumors are usually so small that the surgeon might have a difficult time finding the little "bad pearl" in the gland during surgery. This is the one time when small can be bad, especially if the surgeon is unable to locate and remove the tumor! ACTH secreting tumors, although small and troublesome, are readily cured by surgery alone."
At 11:30 we met with Dr. Haglind. She is the best! Here is what we know: the lesion (now being called a lesion, not a tumor) is on the left side of Jessie’s pituitary gland. It is an ACTH secreting legion. The ACTH controls the amount of cortisol released to the body. The lesion has thrown off the “see-saw” balance of cortisol and ACTH. Dr. Haglind explained it using the example of a mother talking to a child, but the child not responding (I can relate to that :), the communication is bad. From the results that they have from the most recent blood work, it appears that the cortisol levels were not suppressed by the Dexamethazone. Again, the communication line is not functioning the way that it should. With that being said, the next step will be a test called: Inferior Sinus Petrossal Sampling http://www.cushings-help.com/petrossal.htm. This test will be done by a neurologist, and will provide the doctors with a more detailed “blueprint” of the legion on Jessie’s pituitary gland. Her lesion is a bit more “buried” than my tumor was, so they need to make sure that they know all about it (location, size, etc.) before the surgery. Through this procedure, they will take two samples from the pituitary gland (one from each side of the gland) to better determine which side the lesion is largest on, and how much cortisol each side is actually secreting. We are thinking that this ISPS test will take place next week some time. The surgery itself will most likely happen within the next few weeks. Mom should hear back about the blood test results by tomorrow. By the end of this week we will have a date for the ISPS test. Once the lesion is removed, the Cushing’s Disease should go away. All of the discomfort, puffiness, swelling, lethargy, pimples etc. that Jess has been feeling as a result of the C.S. will stop. Again, we should have some dates firmed up by the end of this week. More than anything, Jess is looking forward to feeling like her old self again. Fear of the unknown is always the scariest factor in a situation like this. You want to be educated about what the doctors will be doing, but at the same time, too much information (details) can give your imagination a bit too much to work with.
Please pray for Jess to have peace about the upcoming ISPS test, I know that the thought of it scares her. Pray that she would continue to feel the comfort of God holding her in His arms through all of this, that she would just surrender all of her fears to Him and know that He will continue to be faithful to her. AMEN!
Your messages and prayers have lifted Jessie’s spirits, more than you’ll ever know! We are so blessed to be surrounded and loved by so many dear people. Thank you all so much for your love!
Liz, Nancy & Jess
Before leaving the house yesterday morning, I checked the verse for yesterday (on my google homepage) at http://thedailybibleverse.blogspot.com/: Psalm 55:22 “Cast your cares on the LORD and he will sustain you; he will never let the righteous fall.” I love how God provides us with his tailored words for our day, just what we needed to hear yesterday morning! Thank you, Lord, for your goodness and faithfulness to us!
Recovery Update
17 years ago




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