Thursday, December 20, 2012

Uncured Cushies and Extra-Pituitary Tumors


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

- Melissa 

Extrapituitary Parasellar Microadenoma in Cushing's


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).

My Friend Lori Featured in News

Doctors, Patient From Ohio State Wexner Medical Center To Be Featured On 'Dr. Oz' Show

Wednesday December 19, 2012 5:39 PM

COLUMBUS, Ohio - An innovative operation conducted at The Ohio State University Wexner Medical Center will be featured on "The Doctor Oz Show."
Doctors used the operation to treat Cushing's Disease, an illness Lori Genser Burkhoff has suffered from for most of her life.

Cushing's Disease is caused by a tumor on the pituitary gland, the master gland of the body. Burkhoff was diagnosed when she was 14, when she gained 60lbs in a few months.

"The shape of my face was sort of as if somebody injected air into it. I was weak. I was losing my hair. I was just falling apart," Burkhoff said.

Doctors operated on her pituitary gland three times, but the problems persisted.

"Having a fourth pituitary surgery is sort of unheard of in the medical community, and there are very few doctors in the country who would even attempt to do this," Burkhoff said.
Then Burkhoff, a New York resident, heard of a new way to remove brain tumors, pioneered at the OSU Wexner Medical Center.

Instead of cutting open her head to reach the tumor and remove it, doctors went in through her nose. A brain surgeon worked through one nostril, while Dr. Ricardo Carrau, an ear nose and throat doctor, worked through the other.

"The advantage of doing is through the nose is you have an actual corridor. The nose has some air space. The sinuses have some air space," Carrau said. "So if you can connect the two, you can get to the pituitary gland."

Carrau said that avoiding incisions during surgery helps patients heal faster.

"They recover incredibly better than what they were doing before," Carrau said.

Burkhoff needed two surgeries. CBS' Dr. Oz was there to see for himself how it was done.

Now Burkhoff said she plans to come home to her husband and daughter.
"I'm hoping for a real start to 'Act Two,'" she said.

Doctors removed Lori's entire pituitary gland and part of the nearby bone to avoid a return of Cushing's Disease. Since the surgery, Lori has lost 30 pounds.

The Dr. Oz Show will have Lori's full story Thursday at 4 p.m. on 10TV.
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