Wednesday, April 28, 2021

First Surgery after Bilateral Adrenalectomy

Surgery is a big deal with no adrenal glands. All that cutting into skin and stuff is stressful to the body. With no adrenals to increase cortisol and offset the body's biological need, patients with adrenal insufficiency (primary or secondary) must take extra cortisol for that surgery. It is a whole big thing that we patients have to do to make sure we don't die on the table -- even before we can think about the success or complications of the surgery we are undergoing that day!!

I realized that I posted this to my Fight Cushing's with Moxie page on Facebook but not here on my blog. So, today we go back in time a bit to ensure this important message is here with all the rest of them!

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July 21, 2020 

AI’s always on my mind, sung to the tune of Elvis' You are always on my mind (btw Elvis had Cushing's, you know!)

Today I checked into the hospital for gall bladder surgery. It’s my first surgery since becoming permanently adrenal insufficient in 12/31/2013 when I had both adrenal glands removed. I’ve done everything I’m supposed to do to prepare, and I’ve increased the basal rate on my infusion pump to dispense 6 units of cortisol per hour (3 mg HC). I’ve spoken to surgeon, endocrinologist, and anesthesiologist about my steroid plan for surgery. I will remind everyone again this am what I require. This is a day surgery, and with proper steroid replacement, I hope to be home return home today. 🤞🏽 p.s I tested negative for covid Sunday. 😇

UPDATE 1: All went well. Staying overnight to give steroids via IV push, take IV fluids, and monitor blood pressure.

Wednesday, March 17, 2021

Uncured Cushies and Extra-Pituitary Tumors

extra-

1. a prefix meaning "outside," "beyond," freely used as an English formative: extrajudicial; extraterritorial; extra-atmospheric.

As I reflect on Lori's Cushing's segment today on the Dr Oz show, I remember that her fourth pituitary surgery revealed a tumor in her sinus and her fifth surgery removed her entire pituitary gland as well as part of the bone.

Internet surfing led me to stumble upon this 1999 article. For the first time, I see an official, medical journal article about uncured Cushies, multiple surgeries, and finally finding unsuspecting culprits in non-pituitary places. Extra pituitary tumors sounds like extra terrestrials, though not as innocent as the E.T. portrayed in the movie. While I have seen more cases of suspected extra-pituitary tumors mentioned on the online groups for Cushing's patients, this decade-old article shows that we are not off-base in our assumptions. 

Regardless, this article is fascinating. i hope you enjoy it the way I did. It gives me concrete hope as I face uncertainty waiting for a tumor to show up eventually on a pituitary MRI. I have considered an exploratory third pituitary surgery. This article and Lori's segment today reminds me to take note of all signs I see around me, keep fighting for my life, and continue claw and my way forward to my cure from
Cushing's.

- Melissa 


Extrapituitary Parasellar Microadenoma in Cushing's



Conclusion

Negative sellar exploration, despite the results of endocrine evaluation indicating Cushing's disease, the high incidence of failure of total hypophysectomy, and remission of Cushing's syndrome after sellar irradiation, suggest that the etiology of refractory Cushing's disease in many patients lies near the sella but is not in the pituitary gland. In such patients, the diagnostic and surgical effort should consider the identification and selective resection of an extrapituitary parasellar adenoma and the avoidance of total hypophysectomy and adrenalectomy, which necessitate life-long hormonal replacement therapy and risk development of Nelson's syndrome (2127).


https://academic.oup.com/jcem/article/84/8/2912/2864558