elevated ACTH

I have had pituitary surgery in 2004  with an ACTH secreting corticotroph hyperplasia and a prolactinoma removed. The Cushing's recurred, so due to complications with the Cushing's, I had my adrenals removed in 2006.
My ACTH was high almost right from the start - hitting 1000 in less than one year. Now my ACTH is 3629, I have a lot of hyperpigmentation, my eyes are impacted with abnormal visual fields - just not typical for pituitary.
MRIs show a thickened stalk. The docs are saying that is probably due to all the auto-immune issues that I have had come to light since I have lost all my self-treating steroids.

My MRIs from 1992 to 2003 showed a 5mm tumor that changed slightly over the years. In the last MRI, it was not seen except as a shadow. It took me forever to get treated as my Cushing's was cyclical.

Most docs will not treat me as they claim corticotroph hyperplasia does not cause Cushing's, and therefore the disease process never existed. I found papers that it is a rare form - but it does exist, so why the controversy? I can show them labs and pictures that show drastic changes.

I am now permanently disabled from the effects and trying to resolve the pain, headaches, fatigue, weakness and not able to work any more. What can I do to get effective treatment?

[Daniel M Prevedello, MD]

Dear Rumpled

It sounds like you have Nelson's syndrome at this point. It is caused by overproduction of ACTH by the pituitary adenoma in a person without adrenal glands.
The treatment is either surgery or radiation to control it.
I can review your MRIs if you want.

[rumpled]

Dear Dr. Prevedello,
By some definitions of Nelson's, yes, others, no. My MRIs have had subtle changes over the years, but even though my IPSS shows something is there, since it was hyperplasia, nothing large is showing up even though symptomatically, things are happening. So most are saying since they cannot see anything large on the MRI, just wait and see.

I would be pleased if you would look at my MRIs. Thank you.
Jennifer

[Daniel M Prevedello, MD]

Dear Jennifer

It will be my pleasure to review the MRIs for you (free of charge).
Please send the disc to:

*Daniel M. Prevedello, M.D.*
Assistant Professor
Department of Neurological Surgery
Director, Minimally Invasive Cranial Surgery Program
The Ohio State University
N-1011 Doan Hall
410 W. 10th Avenue
Columbus, OH 43210-1240

Please add info for me to rech you privately.

Thank you

DP

[rumpled]

Thank you. I will compile a few of the older ones and send them out.
Jennifer

[Daniel M Prevedello, MD]

OK. I will call you once I review it.
Thanks

[Daniel M Prevedello, MD]

I tried to call you twice.
Is there a better way to reach you?

[rumpled]

I have been taking physical therapy. I am home in the afternoons, but I have been sleeping through the ring of the phone even if it is next to me (much to the dismay of my husband as well). I will PM you another number and email. Sorry for the problems.

[Daniel M Prevedello, MD]

It was nice talking to you.
See you soon.