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.
Do it! Send those letters! You can word them tactfully, let them think you're doing it purely for their education, but deep down you're screaming "I told you so!!!!".
ReplyDeleteGlad you got validation. :)
Hugs to you and Alex.
Jenny.
Hey! I would do it to. Mainly for their education. Especially when people get older they can get so stubborn and stuck in their ways. Prove them wrong and open their minds' to think outside the box next time.
ReplyDeleteI just wanted to let you know that Wellsphere's HealthBlogger Network has many people who are in a similar situation as you are. If you would like to share your experience and help others cope, I would encourage you to take a look at http://www.wellsphere.com/health-blogger, and to consider applying to join the HealthBlogger Network.
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My daughter has been diagnosed with Cushing's Syndrome but the tests show no tumors. She is currently on an anti-fugal (Keto) and has been for almost two months. I know it takes time but she is very discouraged and mental she is really low and depressed, feeling none of your friends can understand how she feels.
ReplyDeleteWhen you talk about Alex's adrenal glands, were any tumors found?
Keto is not a good long term solution. It's quite hard on the liver.
ReplyDeleteAlex had hyperplastic adrenal glands. They did not have tumors but were enlarged, one double size and one four times normal size... they looked normal on scan.
It's also important to understand that 50% of pituitary tumors are not seen on MRI when read by a radiologist.