Sunday, June 27, 2010

Scott Hamilton: Pituitary Patient & Advocate

Ice Skater Scott Hamilton Undergoes Brain Surgery, People.com

Olympic champ Scott Hamilton underwent brain surgery Wednesday to remove the recurrence of a benign tumor near his pituitary gland, which first appeared in 2004. "They're happy with the progress of the entry process, and now [doctors] can begin to get rid of the tumor," the figure skater's rep, Michelle Thornbury, tells PEOPLE of the procedure, which was completed late Wednesday.

Hamilton, 51, had the surgery in Boston, where he is surrounded by family, including his wife Tracie, their friends and his brother Steve. "They're all feeling the love coming from all of us," the rep says. After the surgery was complete, Hamilton's rep told PEOPLE, "Scott is resting comfortably and expected to make a full recovery. He and his family are so thankful to the doctors and surgical team for taking such good care of him and grateful to everyone for their thoughts and prayers."

He will remain in ICU for a couple days and is expected to return home next week.

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Scott Hamilton undergoes surgery for recurrent brain tumor, CelebrityDiagnosis.com


Craniopharyngiomas are tumors derived from pituitary gland tissues, and typically form in area above the pituitary gland. It is most common in children between 5 to 10 years old, and again in individuals over 50. It is fairly uncommon, only occurring in 2 per 100,000 people.

Craniopharyngioma causes symptoms in one of three ways:

1. Increasing the pressure on the brain (increased intracranial pressure). This causes symptoms of headache, nausea and vomiting, and decreased balance.

2. Disrupting the function of the pituitary gland. This leads to hormone imbalances which can cause growth failure and delayed puberty in children, loss of normal menstrual function or sex drive, increased sensitivity to cold,fatigue, constipation, dry skin, nausea, low blood pressure, and depression. Pituitary stalk compression can lead to diabetes insipidus(DI)- causing increased thirst and urination, and may increase prolactin levels- causing a milky discharge from the breast(galactorhea).

3. Damaging the optic nerve causing visual disturbances, and even blindness.

Treatment of craniopharyngioma is either surgical or with radiation, depending on the size and location of the tumor.

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Not Again: First, Scott Hamilton Fought Off Cancer. Now the Popular Skater Is Battling a Rare Brain Tumor, People.com, March 2005

Now Hamilton, 46, must battle craniopharyngioma, a rare, noncancerous tumor near his pituitary gland that, if left untreated, could leave him blind.

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Scott is a member and advocate for the Pituitary Network Association. He appears in a short but important video on the PNA website.

Heavy health burden: Fat but not my fault

The lovely and lively Sharmyn McGraw is the founder of Hormones411.com and an omnipresent Cushing's activist.

Sharmyn's winding path to diagnosis was chronicled on the Discovery Health program Mystery Diagnosis (click to see full segment).

This past week, Sharmyn was featured in an MSNBC.com article entitled Weight gain from illness, medication spurs sudden shame.

I want to thank Sharmyn for her persistence in getting the word out there about Cushing's. Every time she shares her own journey, Sharmyn educates the public and saves sufferers. One person at a time. Thanks for all you do, Sharmyn!

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Weight gain from illness, medication spurs sudden shame

by Joan Raymond and Jim Seida, MSNBC contributors; updated 6/23/2010


Sharmyn McGraw knows what it’s like to have a body that people envy. For most of her adult life, the 5-foot, 4-inch former flight attendant was a lean size 2. No more. McGraw, 48, now weighs 189 pounds, down from a one-time high of 250 pounds.



It’s not like McGraw stuffed her face with super-size-me burgers and fries. She’s sick. In 2000, she was diagnosed with a rare condition called Cushing’s disease, caused by a benign pituitary tumor. One of the hallmarks of Cushing’s is massive weight gain, particularly in the trunk, face and back.

Though surgery to remove the tumor was successful, McGraw still suffers with severe hormonal imbalances, making weight loss and weight maintenance difficult. And it’s those extra pounds — or more accurately, people’s perception of those extra pounds, she says — that can be as tough to deal with as any disease or treatment that causes weight gain.

McGraw knows all about indignities. She got dumped by a personal trainer after she couldn’t shed pounds fast enough. A doctor told her she could lose weight if she was locked in a closet for a week with only water to drink. Even well-meaning friends could be annoying as they told her about the latest-greatest diet.

'Fat is fat'
“I know how people look at me now, and how people looked at me when I was fit,” says McGraw, who runs a pituitary and brain tumor patient support group in Santa Monica, Calif. “The bias out there against heavy people is incredible. Having an illness doesn’t matter. In people’s eyes, fat is fat.”

In a society that value’s thinness, McGraw’s dilemma isn’t unusual. Weight bias is rampant, although women seem to experience it at lower weights. Though folks who have gained weight due to medical conditions or by taking prescribed medications like steroids that can cause weight gain are only a small fraction of the overweight and obese, they too feel the anti-fat scorn.

“You would think that illness would be somewhat protective (against bias),” says obesity researcher Marlene Schwartz, deputy director of The Rudd Center for Food Policy and Obesity at Yale University. “But (as a society) we like to assign fault. We think it’s so easy to be healthy, and therefore, not fat.”

Because obesity and all of its co-morbidities like heart disease, stroke, diabetes, some cancers, and asthma, to name a few, rack up big health care bills (according to a 2009 CDC study, America now spends as much as $147 billion annually on the direct and indirect costs of obesity) some researchers fear this bias might get worse as health care reform plays out.

“There is some evidence that shows that for whatever reason weight bias is increasing,” says obesity researcher Robert Carels of Bowling Green University in Ohio. His own research published in the journal Eating and Weight Disorders shows a “strong level of contempt” for the obese, especially among people who believe the weight is highly controllable. “There’s a feeling of why should I have to pay for them (the obese), if they can do something about their weight,” says Carels. “As a society we have a strong, pull-yourself-up-by-the-bootstrap mentality, and the overweight are the targets.”

You don’t have to tell that to Nellie Sabin, 56, of Cape Cod, Mass. About 15 years ago, Sabin developed severe migraines, which her doctor treated with a long-term course of steroids. Unfortunately, the steroids produced a massive weight gain of 100 pounds and rebound headaches that lasted about five days.

“I was a complete mess,” says Sabin, a book editor and writer. “I thought I was going to die.” The long-term steroid treatment caused Sabin to develop a hormone disturbance and she also developed severe arthritis in her back, making it difficult to exercise. “Unless you have experienced it, you can't imagine the prejudice and shame associated with being fat, even if it isn't your fault,” says the 5-foot, 10-inch Sabin, who once weighed 155 pounds but now weighs more than 300 pounds.

The good news is that Sabin has the full support of her husband and children. The bad news is that it’s tough to get respect from other people. “Everyone assumes I’m fat because I eat Snickers bars for breakfast. They also assume I’m stupid and have no willpower,” says Sabin. “At this point I would rather not have to meet people than have to explain I’m not a moron and I’m fat for medical reasons.”


Ashamed of own prejudice
Liz Gabor of Cleveland, Ohio, used to be one of those people that thought the obese were an easy target for loathing. That is until she became a self-described “fat girl,” after gaining 60 pounds in about 18 months despite eating well and exercising. The diagnosis: insulin resistance.

“I thought that was a disease that couch potatoes got, so I was embarrassed about everything, and it didn’t help that people looked at me and thought I was bingeing on chips and ice cream all night,” says Gabor, whose weight jumped from 125 pounds to 185 pounds.

Before developing a rare condition called Cushing's disease, Sharmyn McGraw, seen in 1990, was 5-feet, 4-inches and 120 pounds.

She is now taking medication to better help her body respond to insulin and to help her lose weight.

Gabor believes her “time of fatness,” is payback for her years of judging the obese. “I think weight gain, no matter what the cause, can be really complex for some people. But I think I’m even more embarrassed about the way I thought about obesity. It’s very shameful.”

That’s not to say that Gabor, McGraw and Sabin are at peace with their bodies. They want the pounds gone. And the sooner, the better. In the interim though, they are just trying to get through the day.

“I think society makes it tough for everyone to accept the way they look,” says McGraw. “When I was a size 2, I probably thought I could have had a better body. My gosh, that’s really kind of funny now.”

Joan Raymond is a freelance journalist whose work has appeared in Newsweek, the New York Times, MORE and Woman's Day.

© 2010 msnbc.com

What You Must Know about Adrenal Crisis

I just found this page of VERY IMPORTANT information about adrenal crisis that Cushing's patients often face, either after pituitary surgery or after their adrenal glands are removed in a procedure called bilateral adrenalectomy, or BLA.

I am thankful to MaryO, the founder of Cushing's Help & Support.com and Cushie.com

This adrenal crisis page is a very informative for the patient, the caretakers, and emergency medical folks.  Many Cushies print this information and carry it along with their hydrocortisone and Solu-cortef (actovial) meds. They post the information on their refrigerators.

Be sure to read patient stories such as mom Jackie and daughter Sam's situation that went very, very wrong in Robin's post, Stars Go Blue. It brings tears to my eyes every time I read it.

This graphic from Sue explains it all, in a nutshell: