After gaining 120 pounds in 1 year, rare diagnosis saves man's life

Cushing's was featured this morning on the Today Show's Medical Mysteries three-part series. 

Hooray for national exposure for Cushing's!

Donelle Trotman, a father in his 30s, suddenly and unexpectedly gained 100 pounds in a year as well as experiencing strange symptoms.

Donelle shares our desire to spread the word and increase patient awareness about his diagnosis. Read the story and watch the video to see yet another example of how devastating Cushing's can be.

We thank you, Donelle, in joining us as a Cushing's Crusader. We wish you all the best in your healing process. Please contact me if I can help you in any way. 

"There was no time to lose: Untreated, Cushing's is a fatal disease."

“The tumor was no bigger than the size of the tip of my pen," Boockvar said. "And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable."

http://m.today.com/health/after-massive-weight-gain-cushings-disease-diagnosis-saves-mans-life-2D80527683

Describe Life after BLA

Nah. I don't feel like it.  I don't want to write down all my happenings. I want to clearly explain everything but that takes time.  I don't feel like explaining things today.

It has been 28 days since my BLA on 12/31/2014.  The day of my surgery, I was given 300 mg of hydrocortisone intravenously.  I was given 150 mg the next day.  I have been tapering down since then. I left the hospital on a dose of 45 mg hydrocortisone at 7:30 am and 15 mg hydrocortisone at 3:00 pm. I added 0.05 mg fludrocortisone, a replacement for the hormone aldosterone, twice a day since I was post-op day 6.  Every week or so, I decrease my hydrocortisone dose to something near 15/5.  I am getting pretty close so that is good. My doctor will like that, because if I take more than my body needs, the extra hydrocortisone gives me Cushing's again. EEK!  NO!

Last Sunday, I dropped my dose again from 20/5 to 17.5/5. I took the former dose for 7 or 8 days. Even that small of a drop takes the wind out of my sails.  On Sunday, I woke at 7:30 am and was back asleep for a nap by 11:00 am.  This, too, will pass.

I discovered that my dear friend Karen shared her post op BLA experience online and she provides clear explanation.

So today, I'll let Karen explain everything. I hope you feel well again soon.

http://m.caringbridge.org/visit/karenthames1/journal/entry/id/594801436/page/1/num/1

My friend Lori faces 5th pituitary surgery

Please keep Lori in your thoughts. Her cortisol levels dramatically improved/ dropped following Monday's operation in which the neurosurgeon removed two separate tumors. However, the lab work indicates there is still tumor tissue present. She will be having another pituitary surgery -- her 5th in an area the size of a pea-- tomorrow at 7 am central time. The neurosurgeon will remove her entire pituitary gland and the bone surrounding it. This is a much more invasive surgery.

Lori has been fighting for too long to give up now. This surgery is her only option. She first went to the National Institute of Health, long recognized as the most knowledgeable about this disease, when she was only 13. Twenty years later, she is still fighting Cushing's. For many of us, Cushing's won't turn loose. This time, it will.

http://cushingsmoxie.blogspot.com/2012/09/a-case-of-ectopic-pituitary-adenoma.html?m=1

My Friend Lori, a Cushie Warrior, Faces 4th Pituitary Surgery

A friend with persistent Cushing's had her fourth pituitary surgery this past Monday. The neurosurgeon found an 8-9 mm tumor in her sinus cavity that was definitely a Cushing's tumor. This trouble spot had a tail of tissue trailing back to her pituitary to a small spot of abnormal cells.

The neurosurgeon believes that just a few microscopic cells fell during her first pituitary surgery and started a growth of abnormal ACTH cells that caused her Cushing's. The patient had this abnormality in her sinus MRI and no doctor related it to her prior history of transsphenoidal pituitary resection. In fact, pervious pituitary surgeries, while done transsphenoidally (across the sphenoid sinus), were done sublabial (under the lip). This surgery was done endoscopically or through the nose, and this offered the surgeon visual access to the tumor that may have been hiding there since her first pituitary surgery 20 years prior.

Several other Cushies with persistent Cushing's  have commented since Monday that they too have a "cyst" in their sinus cavity. Many will now ask their neurosurgeons to examine these suspicious areas more closely as possible source of abnormal ACTH cells which cause Cushing's.

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A case of ectopic pituitary adenoma occurring in the sphenoid sinus

Neurological surgery (2011)

Volume: 39, Issue: 6, Pages: 601-605
Click for full article full article.

Abstract

Ectopic pituitary adenomas are relatively rare tumors. We present a case of ectopic pituitary adenoma occurring in the sphenoid sinus. A 63-year-old woman was referred to our hospital complaining of headache. She had no endocrinological abnormalities. Magnetic resonance imaging showed a tumor in the sphenoid sinus, adjacent to the sellar floor and appearing as a low-signal on T1-weighted image and a high signal on T2-weighted image. No connection between the normal pituitary gland and tumor was observed. Using an endonasal-transsphenoidal approach assisted with neuro-endoscopy, we performed total removal of the tumor. No connection between the normal pituitary gland and the tumor was found. Histopathological analysis showed a pituitary adenoma. As demonstrated by our case report, differential diagnosis of a tumor occurring in the sphenoid sinus must include consideration of the existence of an ectopic pituitary adenoma.