Diagnosis: "Diffuse adrenal cortical hyperplasia bilaterally". Strangely those words are music to my ears! I always request pathology reports, surgery reports, and anything else I can get copies of. Last week I got some in the mail. It was an envelope full of validation.
Right adrenal gland: tan yellow adrenal gland, 7.5 grams, 5 x 2.5 x 1.3 cm. thickness... a small cyst without cystic contents is present in the mid portion of the specimen...the cortex of the specimen is gray-tan and uniformly soft. The medulla is golden yellow and uniformly rubbery, no discrete lesions are identified.
Left adrenal gland: tan yellow adrenal gland, 17 grams, 7 x 5 x 1.5 cm. The cortex is gray tan and uniformly soft the medulla is golden yellow and uniformly soft...no discreet lesion is identified.
So, one adrenal was double size and the other was four times normal size. Interesting how on scan these were supposedly normal. I'm interested in the cyst and in why one medulla is describes and rubbery but the other as soft. If there is time I will ask Dr. Friedman tonight, but I won't waste my 20 minutes if I've got too many other things to discuss.
I got the surgical report as well, there were a couple of things of interest. The adrenal gland were somewhat adherent, consistent with stimulation by ACTH...there were some adhesions from the liver posteriorly and these were taken down...the spleen was quite large. I don't know the significance, but this means the adrenals were "sticky" and had started adhering to other organs. a large spleen, I don't know?
Am I tempted to send these report along with a letter to the nay sayer doctors we have seen over the years? Yep! Will I actually do it? I don't know! It does feel good having validation.
Sunday, August 23, 2009
Thursday, August 20, 2009
The Headaches Continue
I haven't seen much change since my last post. Overall Alex is still better than she was prior to the BLA. She is now on what may be a maintenance dose, but I doubt it. She is on 2 Florinef pills, split into 4 doses, and takes hydro 3 times daily, split 17.5-5-2.5. She has had a headache almost continuously for the past 2 weeks. It is really frustrating. It worries her that it's the pituitary tumor in their acting up again, but I really think it's about getting the medication dosages correct. We have a phone appointment with Dr. Friedman on Sunday; I hope he will shed some light in the problem.
Once she got to the lower morning dose of hydro she quit getting out of bed early, but she does manage to get up by 9:00 or so. She showers and gets dressed every day and has been chauffeuring me around on errands trying to get in her 50 hours of driving with a permit, before she can try for a license. Most of the changes we saw immediately post op came to a stand still, but we are hoping to see more improvement with lower medication dosages. For now, at least, she is sleeping at night and the GI stuff is gone.
Once she got to the lower morning dose of hydro she quit getting out of bed early, but she does manage to get up by 9:00 or so. She showers and gets dressed every day and has been chauffeuring me around on errands trying to get in her 50 hours of driving with a permit, before she can try for a license. Most of the changes we saw immediately post op came to a stand still, but we are hoping to see more improvement with lower medication dosages. For now, at least, she is sleeping at night and the GI stuff is gone.
Thursday, August 6, 2009
Three Weeks and Gratitude
I am emotionally overwhelmed this morning. I am thankful to God and to all of our family and friends who have supported us through the years. We wouldn't be here without all my friends and advisers at cushings-help.com. Thank you all. The tears are flowing.
So, the big news? Today is Alex's first day of work. I truly believed that it was likely she would never be well enough to leave the house; that she would live with us forever on permanent disability into adulthood. Many times I felt she would die before she was cured. It is incomprehensible that after only 3 weeks she has shown such vast improvement.
There have been a lot of ups and downs over the past couple weeks, but the steady progress forward is apparent. The GI stuff has all normalized, we hope that means Crohn's is a thing of the past but realize this may just be a remission. The headaches have been bad, but we think that once we get the dosages stable on both the hydro and fludro things will improve. Most mornings she is up at 7:00 or 7:30 feeling fine but there seems to be a mid afternoon crash, with tiredness and headache for the rest of the day. We are still working on it.
Stay tuned for more positive updates!
So, the big news? Today is Alex's first day of work. I truly believed that it was likely she would never be well enough to leave the house; that she would live with us forever on permanent disability into adulthood. Many times I felt she would die before she was cured. It is incomprehensible that after only 3 weeks she has shown such vast improvement.
There have been a lot of ups and downs over the past couple weeks, but the steady progress forward is apparent. The GI stuff has all normalized, we hope that means Crohn's is a thing of the past but realize this may just be a remission. The headaches have been bad, but we think that once we get the dosages stable on both the hydro and fludro things will improve. Most mornings she is up at 7:00 or 7:30 feeling fine but there seems to be a mid afternoon crash, with tiredness and headache for the rest of the day. We are still working on it.
Stay tuned for more positive updates!
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