Obese American goes to India for gastric bypass; doctors find brain tumor

http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery...

Plain ol' Obesity or Cushing's?

Weight loss surgery is not for everyone. If you have Cushing's, the docs are jacking with the wrong organ. That will definitely NOT make you better.

When I see an obese person, I never just see an obese person. I look for signs of cushing's. It's actually shocking to see so many with the tell tale buffalo hump, red cheeks, acne, bruising, skinny arms and legs. Cushies are everywhere. I just wish I could stop and talk to every one that I see, to make sure they get checked for Cushing's. I stop and discuss when I can, but alas,  there are just not enough minutes in the day. 

Have some empathy folks. You never know the struggles of those around you. -mm

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In the unique case which will strengthen the confidence of the World in the abilities of Indian doctors, team of specialist Fortis Hospitals Mulund correctly diagnosed and treated a 35 year old US national Ms Michelle Hardin of brain tumor. The US doctors had earlier diagnosed the condition as a case of obesity and recommended Gastric Bypass Surgery.

click to learn more

In the last few years Ms Hardin’s weight increased from 190 pounds to 300 pounds (86 kg to 136 kg). She also suffered from diabetes and hypertension. “I tried various diet control measures but to no avail. Also I had excessive thirst and would drink almost 8 liter of liquid daily and would feel always hungry. My obesity caused breathing difficulty (sleep apnea) and for which I used a special machine (CPAP Machine) to keep oxygen under pressure. Seven months back I took an expert opinion in US, where I was asked to undergo Gastric Bypass Surgery (GBS) to treat obesity. Since GBS was very expensive in US, I thought of undergoing the treatment in India.” Ms Hardin

Ms Hardin decided to visit Fortis Hospital to consult Dr Ramen Goel who has a vast experience of performing thousands of advanced laparoscopic surgeries including bariatric surgeries.

“Ms Hardin visited us with the known fact that she had to undergo Bariatric surgery through Gastric Bypass method. Detailed investigations at the hospital however revealed that she actually had a Pituitary Tumor on the right side of the pituitary gland of about 1cm in diameter. The weight gained was actually because of this pituitary tumour and not because of any case of obesity. I referred her to Dr Milind Vaidya, Consultant Neurosurgeon who has an expertise to remove the tumour through minimally invasive procedure.” said Dr Ramen Goel.

Dr. Milind Vaidya, Consultant Neurosurgeon, Fortis Hospitals Mulund said, “The tumor, situated in pituitary gland at the base of the brain, triggered excessive production of cortisol hormone by the adrenal glands leading to complications like uncontrolled diabetes, hypertension and weight gain. We treated her by transnasal- transsphenoidal excision of the pituitary tumor (a minimally invasive procedure) on 14th Jan 2011.”

Dr Vaidya used an endoscope & microscope to reach the tumour through her nostrils. He used both the nasal openings to reach the tumour to avoid incision or scar. He took special care to remove every bit of the tumour, to achieve cure and preserve the normal pituitary gland.

Ms Hardin had an uneventful excision of the right sided tumor and the normal pituitary on the left side was left untouched. Her nasal pack has been removed and she is doing well post-operation, with diabetes & hypertension under good control.

“I was shocked to learn that I suffered from tumour. I thank the doctors of Fortis Hospital. Had there been no timely intervention from them I wouldn’t know what would have happened to my life. Post operative my thirst & appetite have reduced markedly to normal levels. Doctor assured that my weight will be restored to normalcy gradually.” Ms Hardin.

According to Dr Vaidya, “Ms Hardin’s life is today safe and secure only because of timely detection. Had we continued the treatment of GBS or had we wrongly diagnosed the case, her condition could have been critical. Hence timely detection and right expertise is very crucial. This case is a testimony to the quality and credibility of Indian Healthcare expertise.”

Today India is considered as the best treatment destination by foreign patients as they can avail the finest medical facilities at affordable rates. Fortis has partnered with Indushealth in the US who has played a significant role in helping many such international medical travelers avail quality healthcare services at Fortis.

From http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery-in-the-us-35-year-old-american-lady-weighing-136-kg-was-correctly-detected-of-brain-tumor-at-fortis-hospitals-mulund/

This blog post is posted from Cushing's & Cancer at http://cushingshelp.blogspot.com/

Fighting Fire with Fire? Just leave me alone!

My knees have been burning so much today. I sit in a chair, with my legs bending naturally at the knee and hanging down. The muscles on the side of both knees burn like they are on FIRE within 30 seconds. I have to straighten them out to relieve the pain. Rinse. Repeat. Other times, I sit with my legs up in the recliner, keeping my legs straight in an effort to avoid the burning. When I let my feet down to stand, my knee joints are so stiff I can hardly walk. Boo. I hate you, Cushing's disease.

Doctors unlikely to spot Cushing's

That degree on the wall means your physician graduated medical school. It DOES NOT tell you which ones made As and which ones made Ds.

--mm

Physicians can perform poorly when patients need special care, study suggests.

http://www.sciencedaily.com/releases/2010/07/100719174905.htm

"Physicians did quite well at following guidelines or standard approaches to care, but not so well at figuring out when those approaches were inappropriate because of a particular patient's situation or life context."

So, to me, this reinforces the need for cushing's patients to become an expert about the disease and advocate for the improvement of their health. Docs are less likely to put all of the pieces together, but when they do, the good ones do it in the same amount of time it takes a bad one to blow you off! 

Take a look on the sidebar for the link for Tips to Get Diagnosed Quickly.

Anxiety and Endocrine Disease

This is a fascinating literature review about the classic chicken-and-egg debate for endocrine patients. Doctors insist my depression, weight gain and not wanting to interact with others is related to my ANXIETY instead of my anxiety being one of many symptoms of my ENDOCRINE disorder.

"In reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered."

HALF?! These MDs need to get with the program! Listen to your patients!  When patients say they feel anxious and depressed and we tell you that we *tried* all of the stress reducing advice and we are still anxious, keep digging and thinking until your patients feel better. What a concept! Please do not make assumptions that we are lying or over-exaggerating just because you don't know the answer. Figure it out, as it is literally the reason you get paid the big bucks.  The weight of this burden should not just fall on our shoulders, but on yours as well.

-mm

http://www.drrichardhall.com/anxiety.htm

"The first step in defining whether an anxiety disorder is due to a general medical condition is to establish the presence of a general medical condition that is often associated with the production of anxiety symptoms. The DSM-IV defines the most common endocrinological conditions associated with anxiety states as hyper- and hypothyroidism, hypoglycemia, pheochromocytoma, and hyperadrenocorticism. Anxiety may also occur following the exogenous administration of estrogens, progesterone, thyroid preparations, insulin, steroids and birth control pills. Popkin, in addressing the issue of endocrine disorders presenting with anxiety, suggests that anxiety states frequently occur in association with adrenal dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. Popkin cautions that prospective, carefully controlled studies on the etiology of anxiety in these conditions are lacking. The studies that are cited are almost exclusively case reports. He argues for more structured and careful research into the organic basis of these conditions.

Jefferson and Marshall identified hyperthyroidism, hypoglycemia, pheochromocytoma, and hyperadrenalism as the medical illnesses most often associated with anxiety symptoms and most frequently misdiagnosed initially as a primary anxiety disorder.

Hall et al in a study of medically induced anxiety disorder found thyroid disorders, i.e., hyper- and hypothyroidism and thyroiditis, to be the most frequent medical conditions misdiagnosed as primary anxiety disorder.¹¹ Other common medical causes for anxiety in their study included hypoglycemia, Addison's and Cushing's Disease, hyper- and hypoparathyroidism, and diabetes mellitus. Rarer causes included various virilizing tumors and hypo- and hyperpituitarism.

Differentiating Anxiety Associated with Medical Illnesses from Primary Anxiety Diseases

After the clinician has established the presence of a general medical condition known to be associated with significant anxiety symptoms, he/she should undertake a careful and comprehensive assessment of the factors necessary to link the two conditions. Although there are no absolute guidelines, certain associations are helpful in establishing this connection. Are the onset of the symptoms temporally related? Is there a temporal association between the exacerbation or remission of the general medical condition and the enhancement or abatement of anxiety symptoms? Do anxiety symptoms disappear when the primary medical condition is treated? Are features that are atypical of a primary anxiety disorder present such as the usual age of onset, the initial presentation, type of onset, or an absence of family history? The clinician should also judge whether the disturbances that are present may be better accounted for by the presence of a primary anxiety disorder, a substance induced anxiety disorder, or an adjustment disorder brought on by the diagnosis of a primary medical condition.

In earlier work, reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered. In comparing these patients to patients with primary anxiety disorders seen in clinic, certain characteristics differentiated the patients with organic anxiety from those who suffered from a primary or psychogenic anxiety disorder. 1.) Patients with anxiety secondary to underlying medical illnesses tended to have disease characteristic fluctuations in the severity and duration of their anxiety or panic attacks. 2.) There was a clear cut association between the progression of their anxiety and their underlying disease. 3.) Medically induced anxiety disorders were most likely to have onset before the age of 18 or after the age of 35 in patients with a negative personal and family psychiatric history of anxiety or affective disorders and in patients who had not previously suffered from anxiety symptoms."

Fitness fanatic goes from size 10 to 18 in weeks after pituitary gland tumour | Mail Online

Do you see your story when reading Kathryn's?

http://www.dailymail.co.uk/health/article-1348504/Fitness-fanatic-goes-size-1...

Trip Recap

So much has happened in the last few days. I'm on the plane with 30 minutes left in my 3 hr non stop flight home. Cloud cover prevents me from seeing the kitties below, but we must be over Texas by now.

Many Cushing's patients travel from all over the US and Canada to receive treatment in Los Angeles. I'll provide more details later on that. So, I thought I'd share travel info with my Cushie friends in hopes of making their medical trip a tad more pleasurable.

Rather than tell the story chronologically, I decided to try to write in little bits and pieces. Some will be medical. Some will be touristy. Some will be my random thoughts, and that's allowed because it's my blog. :)

I lived in Los Angeles and Long Beach a decade ago. It has been the most favorite city that I've ever lived in. That's saying something, too. I have lived in 10 different cities since flying my mama's coup for college. My point? I love LA to pieces, and I'd love for you to experience the LA that I know and love.

Let's start with these wonderful plants--birds of paradise. They are everywhere, and they always a lovely reminder that the warm sun keeps the City of Angels exciting and exquisite. ~ mm

See and download the full gallery on posterous

Making Good Use of our Time Away

If we have to spend thousands of dollars to travel to see Cushing's specialists, we should at least have some fun while we are at it.

I am super excited that Colin Firth, the actor, is getting his star on the Hollywood Walk of Fame this week!!! I am totally going!!! He is one of my favorites :) He is a total doll face.

Colin Firth
("Bridget Jones", "Pride and Prejudice")

Thursday, January 13, 2011 at 11:30 a.m.
(6714 Hollywood Blvd, near McCadden)

Cushies, you can check the schedule to see who will be here the week you have your appointment out here. Heck, you can schedule your doctor appointment around this schedule! Hahaha

CELEBRITIES ABOUT TO RECEIVE STARS ON THE HOLLYWOOD WALK OF FAME

The celebrities listed below will appear in person on Hollywood Blvd or Vine Street to receive their stars. (Except, of course, for those awarded their stars posthumously).

http://www.seeing-stars.com/Calendar/index.shtml#WalkOfFame

See and download the full gallery on posterous

Life as a Cushie

I am starting a series, like a photo essay, trying to explain how Cushing's impacts my daily life. Today, I point out that the seat belt in the airplane is near the maximum allowed length. It's around my waist with but an inch to spare. Thankfully it is a little loose. I almost cried when I buckled up today. My stomach has gotten so big. I just don't feel like this is my body anymore. It has a mind of its own, following cortisol's instructions instead of mine.

Like other embarrassing or emotional debilitating moments with this disease, I acknowledge it, and I release it. These thoughts no longer serve me, and I'm doing the best I can. Fighting for myself. Trying to figure out a loop hole in the system to try to get myself better sooner. I have pushed myself all along. I will try to forgive myself and be more understanding of my situation in 2011. Kindness to all, including myself.

-mm

See? Flying High

Life as a Cushie

Heading for Help

I am sitting on a plane, headed to Los Angeles, CA. I hope that my search for a compassionate and knowledgeable doctor will end with my appointments this week.

Many Cushing's patients have guided my decision to try this doctor. He is a cushing's specialist. These patients blazed the path, and I thank them for all of their efforts to help fellow Cushies.

I will be updating from LA. I hope it will helpful and informative to go on my trip with me.

-- mm

GET YOUR LABS THROUGH AN APP :)

I have a major issue with testing all the time for Cushing's. Besides the obvious hassle of *having* to test so much to prove that I am sick, I want my results ASAP.  I do not want to wait. I don't need a doctor to tell me what they mean (well, 90% of the time), and I certainly don't like asking the nurse or caller follow-up questions for no real answers. I have realized they are just reading or repeating what the doctor said. 

My life saving go-to websites are LabTestsOnline and Cushing's Help and Support message boards. I get so much more information in real terms that I can understand from these sites.  Then, I take what I learn and discuss it with my doctor at the next appointment.

So you can imagine my thrill in finding out Quest Diagnostics has a new free app called Gazelle. This app is available in select states and on the Apple® iPhone, iPod Touch, and BlackBerry® Curve, Bold, Tour, and Storm. Android is coming soon!

After registering with Quest Diagnostics, click lab results.  You will enter the date of service, doctor's name and phone number. You get an email confirmation that your request was received. Labs are not returned immediately, unfortunately.  They are emailed a few days after the request is made. The system emails it to the email addy in your profile. The abnormal values are highlighted in blue. Easy to read!  Plus, it's a good first step in my efforts to get all of my medical records digitized and easily accessible online. In addition, the patient can email the results to any email address. I email them to myself, and voila!   Digital copy :)  I am super pleased with this development.

Here is a link to all Quest Diagnostic apps.

I have an appointment with Quest for a blood draw this Wednesday.  After my appointment, I plan to enter the information into the app, so that I will have an email as soon as they are ready. I really hope this system is responsive and resolves my need-to-know inclinations.  It's my life, my labs, and I want them :).

Viva la digital revolution!

~mm

HERstory: A look back

I wanted to share a post I wrote nearly one year ago. The  HerStory post shows my previous collage and how to make one for yourself.

~Moxie Melissa

Change's a-Comin'

You may notice that some recent posts are short and look different from my previous entries.  That's because I found a way to post to the blog more efficiently, which hopefully, translates to more often.  So!  I will be passing along all sorts of goodies: medical articles, trip updates, MRI results, etc.  I hope you are up for the traffic increase!  As always, you are welcome to email me at any time at moxiemelissa (at) gmail.com. :D

Erella's Story

Erella, who is featured in the last post, also has a one hour CBC 1999 documentary about her and her  introduction to the cushings world. It is 67 megs and you have to carefully follow instructions with rapidshare in the FREE DOWNLOAD area.http://rapidshare.com/files/441306528/01_Brain_Surgery_For_My_Soul.mp3

I want to thank Erella for sharing so much of herself and her story, as we all learn the most about Cushing's from other Cushies. 

Hugs to you, Erella.

Melissa

Cushing's documentary

Check out Erella's 30 minute documentary featuring her battle with Cushing's. http://www.erella.com/Video_Lightbox/index.html

SOS: Help a Cushie

26-year old Kathryn would like to hear from anyone with the same condition. She can be contacted by e-mailing kathrynanne1984@hotmail.co.uk

http://www.runcornandwidnesweeklynews.co.uk/runcorn-widnes-news/runcorn-widne...

New test for the Growth Hormone Deficient?

AEterna Zentaris, Inc. (Nasdaq:AEZS) announced that it has reached agreement with the Food and Drug Administration (FDA) on a Special Protocol Assessment (SPA) for Solorel® (AEZS-130, macimorelin) which will enable the Company to complete the ongoing registration study required to gain approval as a diagnostic test for Adult Growth Hormone Deficiency (AGHD).

Aeterna Zentaris is a late-stage oncology drug development company currently investigating potential treatments for various cancers including colorectal, ovarian, endometrial cancer and multiple myeloma.

GUEST POST: Best Kept Secret in Medicine

Sharmyn McGraw emailed this last week. You can read my previous posts about Sharmyn for some of the best info we have about Cushing's--from the patient's perspective here and here.

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~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor. 

Hello everyone!

Please take one minute and watch this video, Dr. Daniel Kelly from the John Wayne Cancer Institute in Santa Monica, CA. 

Pituitary gland problems have many symptoms (video and article)
       *(melissa says, "then share it with all your friends on facebook!"

Many of you know I am a national spokesperson for those afflicted with Pituitary Brain Tumors and/or Hormonal Disorders-The Best Kept Secrete in Medicine. And don’t panic, I have never asked anyone for a financial donation and I’m not now, but I do need your help.

I receive over a 150 emails a day and many of them are from people asking me to pass along a prayer or some damn thing to a zillion of my closest friends or you and everyone you know will have some angel pissed off and there will be no blessing for you….! WELL, it’s time we pass around something that can really make a difference in your life or even save someone’s life-I promise!!!!

Through the years I have done professional speaking, TV shows and written articles all to help raise awareness for those afflicted with pituitary disease. But the biggest impact was the show I did for the Discovery Health channel, Mystery Diagnosis; the show features my story living undiagnosed for seven horrible years with Cushing’s disease, caused by a pituitary brain tumor. Thank God the show is still airing and still saving lives!!! So please send this email to a zillion people to help make an even bigger impact!!!! And watch the ABC special with Dr. Kelly and pass it to all your friends, put it on FaceBook, YouTube, and Tweet your friends. Healthcare needs our help!!!

I have received hundreds of emails through the years and met hundreds of people whose lives were forever changed because of one TV show. Literally because of one Mystery Diagnosis episode people have been correctly diagnosed with a disease that doctor after doctor missed for years and years. Sadly in many cases because of a prolonged diagnosis it left the patient disabled, not because the pituitary tumor wasn’t treatable but simply because of lack of current and accurate information among our medical professionals and the public.

Pituitary tumors are the Best Kept Secrete in Medicine because they are so often misdiagnosed but can cause so many people to suffer or even worse die without proper treatment. Usually the patient symptoms present as multiple common health issues and unless your medical professional is trained to recognize the signs and symptoms related to a hormonal disorder caused by a pituitary tumor the patient is often left undiagnosed or treated for many different health conditions but never getting to the root cause.

The hard facts are we lack proper education so severely in the US about pituitary tumors and/or hormonal disorders that even our highly respected Dr. Oz made a completely inappropriate comment on TV about a patient that was found to have a pituitary tumor on the Oprah show. His statement was something about simply “plucking” a pituitary tumor out which is a perfect example of the lack of education even among a medical doctor who is looked at by many people as a know-it-all of medicine. But no one medical professional knows everything; however, when a patient presents with a laundry list of poor quality of life issues or a pituitary tumor is found on an MRI it certainly warrants a proper medical evaluation and if it is out of the doctors expertise they need to step up and refer their patient for another opinion.

Pituitary disease is a subspecialty field of Neuro-endocrinology. Obviously as a cardiologist it is out of Dr. Oz’s expertise but like many medical professionals, grossly downplaying the severity of a life threatening illness or not admitting when something is out of their level of expertise is just bad healthcare. Most pituitary patients go far too long without a proper diagnosis and in far too many cases never getting a diagnosis at all. We have been trained to trust our doctors and assume we are getting the best medical treatment; unfortunately when it comes to a pituitary disorder that just isn’t the case.

Pituitary tumors and/or disorders can cause: Rapid weight gain (obesity) or weight loss, heart disease, diabetes, high blood pressure, depression, anxiety, infertility, low libido, sleeplessness, hair lose, abnormal hair growth, enlarged hands/feet/jaw, blindness, and more. Most people suffer for years with a pituitary tumor and are most often told by their physician, “It’s all in your head. Exercise more and eat less” Well they are party correct but for all the wrong reasons...the pituitary gland sits at the base of the brain, and yes, hormonal disorders caused by a pituitary tumor can at times make the patient feel mentally unstable but more exercise and eating less is not proper treatment for a serious brain tumor. And we need better education for our medical professionals.

Studies show one in five adults may have a pituitary tumor-that’s 20% of our population. A healthy pituitary gland is as important to our quality of life as a healthy heart, liver, kidneys, and any other major organ or body part.

The good news is pituitary disorders in most cases is a treatable illness if a timely and accurate diagnosis is made but unfortunate they are life threatening when left untreated. So please take time to educate yourself and others about the Best Kept Secrete in Medicine. Please pass this email to everyone you know and FORSURE you will be improving someone’s life and you could even be saving someone’s life.

Many blessings,

Sharmyn McGraw

www.brain-tumor.org or www.hormones411.org
 

~IMPORTANT PLEASE READ~ Ms. McGraw is a patient advocate, professional speaker and published author. As a volunteer she facilitates the Pituitary and Brain Tumor Patient Support Groups for the Brain Tumor Center www.brain-tumor.org at the John Wayne Cancer Institute. All comments are based on Ms. McGraw's personal experiences and she is not responsible for any miscommunication. Ms. McGraw is not a medical professional. Always consult your own medical doctor.

RIP Janet

Rest in peace, dear Janet.

My heart breaks for Jennie, Janet, and their entire family. I am sorry for your loss, and I am sorry that the medical community failed your family.

Thank you Jennie, for sharing this story. In your honor and hers, I will share this story here on my blog, in hopes of saving someone's life.

The Cushing's community *must* continue to generate awareness for this devastating disease, and we must lead the medical community by example.

No life should be lost to this preventable disease. ~mm

Jennie Whitehead Brick wrote:

My sister, Janet Whitehead Mitchell, died Sept. 16, 2010 of Cushing's Disease. The autopsy revealed that she had cancer of the pituitary gland. She is only the 140th person in medical literature to have cancer of the pituitary gland. She was 59 years old. She had many of the symptoms of Cushing's for a few years, but ...was diagnosed just a few days before her death. I will do what I can to spread the word about Cushing's in the hope that someone else will get diagnosed earlier on in their fight with the disease.

Click here and scroll down to see Janet's high school photo and click here to see the photo from her obituary.

Collection of Cancerous Brains Helps Show Neurosurgery’s Rise

Super New York Times article about Dr. Harvey Cushing's collection of brains in jars, now housed in the Cushing Center at Yale. Homage to him as father of modern neurosurgery. Center has visiting hours! Be sure to check out the slide show:

Dr. Harvey Cushing, one of America's first neurosurgeons, kept extensive samples of his work, but many of the details have been lost. The brains and photos that are on exhibit at the Cushing Center at Yale University are believed to have been made as part of the patients' medical records. The collection includes photos taken of patients before and after operations, tumor specimens, and microscope images. In total, there are almost 10,000 glass plate negatives of patients treated by Dr. Harvey Cushing between 1902 and 1933.

Credit: The Harvey Cushing Brain Tumor Registry, Cushing/Whitney Medical Library

Collection of Cancerous Brains Help Show Neurosurgery's Rise

August 23, 2010
Inside Neurosurgery’s Rise
By RANDI HUTTER EPSTEIN, M.D.

NEW HAVEN — Two floors below the main level of Yale’s medical school library is a room full of brains. No, not the students. These brains, more than 500 of them, are in glass jars. They are part of an extraordinary collection that might never have come to light if not for a curious medical student and an encouraging and persistent doctor.

The cancerous brains were collected by Dr. Harvey Cushing, who was one of America’s first neurosurgeons. They were donated to Yale on his death in 1939 — along with meticulous medical records, before-and-after photographs of patients, and anatomical illustrations. (Dr. Cushing was also an accomplished artist.) His belongings, a treasure trove of medical history, became a jumble of cracked jars and dusty records shoved in various crannies at the hospital and medical school.

Until now. In June 2010, after a colossal effort to clean and organize the material — 500 of 650 jars have been restored — the brains found their final resting place behind glass cases around the perimeter of the Cushing Center, a room designed solely for them.

These chunks of brains floating in formaldehyde bring to life a dramatic chapter in American medical history. They exemplify the rise of neurosurgery and the evolution of 20th-century American medicine — from a slipshod trial-and-error trade to a prominent, highly organized profession.

These patients had operations during the early days of brain surgery, when doctors had no imaging tools to locate a tumor or proper lighting to illuminate the surgical field; when anesthesia was rudimentary and sometimes not used at all; when antibiotics did not exist to fend off potential infections. Some patients survived the procedure — more often if Dr. Cushing was by their side.

Most of the jars contain a single brain; a few hold slices of brains from several patients. Some postoperative photographs next to the jars show patients with tumors bulging from their heads. When Dr. Cushing could not remove a tumor, he would remove a piece of the skull so the tumor would grow outward rather than compress the brain. It was not a cure, but it relieved the patient of many symptoms.

Dr. Cushing, born in Cleveland in 1869, was an undergraduate at Yale and finished his career here as a professor of history of medicine. In between, he went to Harvard for medical school, did his early surgical training at Johns Hopkins and became a surgical professor there, and then spent most of his career as chief of neurosurgery, a new specialty, at Peter Bent Brigham Hospital at Harvard (now Brigham and Women’s).

When he began operating in the late 19th century, a few other doctors were also venturing into the brain, but for the most part the patients did not survive the procedure.

“In the first decade of the 20th century, Harvey Cushing became the father of effective neurosurgery,” the medical historian Michael Bliss wrote in “Harvey Cushing: A Life in Surgery” (Oxford, 2005). “Ineffective neurosurgery had many fathers.

“Cushing became the first surgeon in history who could open what he referred to as ‘the closed box’ of the skull of living patients with a reasonable certainty that his operations would do more good than harm.”

Sometimes doctors went into the brain and could not find the tumor. Sometimes they talked to patients during surgery. Dr. Cushing, for one, often used only the local anesthetic Novocain. (The brain itself does not have pain receptors, but having one’s skull cut open must have been agonizing.) Mr. Bliss writes that in 1910, midway through a 10-hour operation on the renowned physician and Army Gen. Leonard Wood, Cushing wanted to stop operating and continue another day, but General Wood — fully alert — begged him to continue.

Dr. Dennis Spencer, the chairman of neurosurgery at Yale and the Harvey and Kate Cushing professor of neurosurgery, said Dr. Cushing’s major accomplishment was “his meticulous operative technique.”

“Whatever approach he was going to use to get to a tumor,” Dr. Spencer said, “he had this incredibly good judgment in terms of where the tumor was, getting there without harming the brain and then getting out.”

Brain surgeons in those days were medical sleuths, relying largely on patients’ accounts of their symptoms to figure out where the tumor was. Dr. Cushing popularized an eye exam that took advantage of the specific ways in which different tumors can distort vision — a strategy used into the 1970s, when M.R.I.’s and other imaging tools replaced it. Even today, many tumors in the pituitary gland, which straddles the optic nerves, are initially detected because patients have trouble seeing.

Dr. Cushing also discovered that pituitary tumors could lead to vast changes in the body. Cushing’s disease and Cushing’s syndrome — two illnesses linked to hormones gone awry — are named for his discoveries.

Indeed, comparatively little progress has been made since Dr. Cushing’s time in actually prolonging life in brain-cancer patients. “It is fascinating how far we’ve come in terms of technology but not really in terms of progress for most malignancies,” Dr. Spencer said. “Everything we’ve done in the last 100 years has changed the progress for malignant brain tumors very little, extending life maybe eight months to two years.”

He added, though, that “in many tumors we are getting closer to the genetic understanding, and I’m optimistic in the next 10 years we will make a lot more progress.”

In addition to his medical achievements, Dr. Cushing won a Pulitzer Prize in 1928 for his biography of his mentor, Dr. William Osler. He devoted his life to his work, leaving little time to his five children. His three daughters gained notoriety for their marriages — one to James Roosevelt, a son of President Franklin D. Roosevelt, whom she divorced, later marrying the publishing plutocrat John Hay Whitney; one to William Vincent Astor, heir to a $200 million fortune, whom she divorced, later marrying the painter James Whitney Fosburgh; and the youngest to the Standard Oil heir Stanley Mortimer Jr., whom she divorced, later marrying the CBS founder William S. Paley.

The collection expanded while he moved from Johns Hopkins to Harvard and eventually Yale, where they ended up in dusty storage bins before their recent $1.4 million restoration, partly paid for by money from a former patient’s family. The brains and their records were a “complete mess,” recalled Dr. Gil Solitaire, a professor of neuropathology at Yale in the 1960s who once shared an office with some of the Cushing paraphernalia. “Some were totally dehydrated, and the jars were cracked.”

In 1979, the specimens were moved from the bowels of the hospital to the basement of the medical school’s dorms. It was there that the students in the 1990s started a Brain Society — with membership extended to anyone who had the nerve to sneak into the dank basement, walk through the cluttered hall of brains and sign a poster, which now hangs in the Cushing Center.

“It was a rite of passage,” said Dr. Tara Bruce, now an obstetrician-gynecologist in Houston, who became a society member during her first year of medical school in 1994. “Everyone went to see the brains. It was surreal. I had just got to Yale and I remember thinking, ‘I guess Yale has so much great stuff that they can just shove a bunch of brains in the basement.’ ”

Dr. Christopher J. Wahl, an assistant professor of orthopedics and sports medicine at the University of Washington, wrote his thesis about the brains when he was a Yale medical student, stirring an interest in the restoration.
“The most incredible thing is that it’s not just the physical documentation of the founding days of neurosurgery but a social document,” Dr. Wahl said. “The bravery of these patients that really had nowhere to turn and this guy who was — cowboy is the wrong word, but an incredible innovator who was doing things at the right time and place.”

The Cushing collection in the Cushing/Whitney Medical Library at Yale University at 333 Cedar Street, New Haven, is open to the public Monday through Friday, 8 a.m. to 8 p.m.; Saturday, 10 a.m. to 8 p.m.; and Sunday, 9:30 a.m. to 8 p.m. (203) 785-5352.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression

For the regular readers of this blog, you know that I may be more bothered by my languishing mental acuity than changes to my body. As my previous two posts show, my body has faced significant changes. Truthfully, I am bothered by both, rightly so.

I want to share a medical article Susan posted today. She is an active member of the message boards. We frequently share peer-reviewed medical literature, always in an attempt to understand our disease better. These "Cushies" know more about Cushing's than many, MANY endocrinologists.

I encourage you to click through and read the article below. I will excerpt a few passages here.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression.
J Neuropsychiatry Clin Neurosci 17:159-166, May 2005. Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D. Tampa, Florida. © 2005 American Psychiatric Press, Inc.

ABSTRACT

Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis. The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.

CASE SERIES

Case 4 (BLOGGER NOTE: This is totally me! I moved it to the top spot because this is a "cushie.")
Ms. D is a 36-year-old married Anglo woman, employed as a nurse, diagnosed with an ACTH-producing pituitary microadenoma in 1992. She was treated surgically following a brief period of hormone deficiency. At the time of her psychiatric assessment, however, she had regained full hormonal function. Ms. D reported that since regaining her hormonal function she noticed some "dragginess." She reported there were times when she did not feel very motivated, and she thought that it took much more energy for her to do her normal activities. She reported that when she would take pseudoephedrine for sinus problems, she would see things "with more clarity" and that she would be able to be more focused in her attention and her ability to complete her tasks. Otherwise she tended to procrastinate and get distracted from various tasks.

Case 1
Mr. A is a 48 year-old Anglo lawyer and architect, diagnosed with a pituitary adenoma (clinically nonfunctioning) and treated with a transsphenoidal resection in 1997. He first noted memory problems in 1991 that worsened over the years, causing problems such as concentration and focused attention. He reported problems such as getting lost in familiar places and forgetting the names of people he had known for many years. He believed his thinking process was slow and he was "not as quick on the uptake" as before. He reported that he had an excellent memory, never having to use a reminder book of any kind prior to these symptoms.

Case 2
Ms. B is a 55-year-old Anglo homemaker with a history of a prolactinoma, diagnosed 15 years before her psychiatric evaluation. She reported that her symptoms of the tumor were primarily mood swings, headache, and loss of menstrual periods. She underwent surgery followed by radiation therapy, ultimately developing panhypopituitarism. Since then, she has been managed on hormone replacement, but she began to notice short-term memory difficulties. She reported difficulty finding the right words to express her thoughts. She also noticed difficulty in concentration and focused attention. She reported occasional fatigue and depressed feelings. She reported intermittent suicidal thoughts when she reported the depressed mood, but no active plans of suicide were reported during those times.

Case 3
Ms C. is a 47-year-old Anglo woman, employed as a management supervisor and diagnosed with a pituitary macroadenoma (clinically nonfunctioning) in 1994. She underwent transfrontal surgical resection and did not receive any postoperative radiation treatment but did develop panhypopituitarism. Since 1996, several changes in her behavior and personality were noted. Prior to the tumor she was a very active person. She was able to do very well at work and maintain a leadership position. She could do multiple tasks at once and received a lot of satisfaction from her work. However, after her surgery and recovery, she noticed that she was no longer able to multitask. She was deriving less satisfaction from her work and experienced transient periods of sadness. However, she was most concerned about her lack of energy and motivation. When she was able to work, she had to organize her activities very thoroughly and continuously write down everything in order not to forget what her tasks were. It took a lot of mental energy to function, and after work she would often need to take a 2-hour nap when she returned home. She showed no motivation to adequately take care of her home, including normal household chores. She reported she was not able to muster up much enthusiasm to interact with her grandchild because she was concerned about her energy and drive.

OH YEAH: There was one other time I felt skinny

Cushing's and its related hormonal imbalances have led me to gain 100 pounds in about 5 years. That's difficult on a self-esteem. Recently, I liked what I saw in the mirror.

Boston, Massachusetts, May 2010

 

 

Austin, TX, July 2010

 

 

WANNA LOOK LITTLE: Get next to something bigger!

Some days, I don't care. I am going to do something fun. When I saw this hippo in a small Texas town, I knew the hippo people put those steps there for a reason. I tell you what... I've never felt skinnier!

 

Tell me all about yourself

Hi there. Soooo much has happened, and I am really late getting all of it posted here. In the meantime, I found something I wrote back in 2007 on the Cushing's message boards. Sadly, I feel the same way today. Maybe soon, I'll start to feel better.

It is difficult to see your body change when you are doing nothing to provoke it.
It is difficult to see your body betray you.
It is difficult to admit that your body is no longer your own.

So, while I'm getting my ducks in a row to update and share lots of good Cushing's info, maybe you can tell me more about YOU. Who are you, and why do you follow me on this blog?

I would love to have some guest moxie posters. Email me at moxiemelissa at symbol gmail.com, and tell me your story. I would love to post it here to share with others. If that is okay, please be sure to let me know in your email.

Have a good weekend.
Melissa

Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile.

AFTER CUSHING'S: Wish and Do List

I have become so discouraged lately. I am really at my wit's end. No tumor on my 3T pituitary MRI this past Tuesday. Biochemical evidence is still equivocal, docs say, "not high High HIGH enough," I say. I am so depressed. I just keep thinking of all the things that I am missing by being sick.

If there is one GOOD thing about having a chronic disease that makes you as hopeless as Cushing's does, it is that I have had lots and lots of time to sit and wish and wonder.

SIT because my weak leg muscles, caused by documented adult growth hormone deficiency, keeps me from walking or running or many other activites.Shoot, I can't even stand in my own air conditioned kitchen for longer than 10 minutes at a time. That's sad.

WISH for a change so that I won't be trapped in a broken body that doesn't match my vibrant spirit.

WONDER when I will ever get to do what *I* want to do again, do the things that make me *me*, and wonder, if given that chance, what would I want to do.

I know me, and when I am down in the dumps, I really need to focus on something positive. Not just teensy weensy positive. Big mama gargantuan monolith o' positive.

I decided to share things as I think of them, things that I hope to do once my bod is both physically and mentally ready to do them. I hope that day is soon. For you, I hope you can find it in yourself to galvanize your wants and dreams, and even with this awful disease, feel like they are still close enough to reach out and touch them.

You see, I have a love for language, cultures, and photography. Cushing's disease has kept me grounded for the last 10 years, and I am just itching to get back out in the world--to explore and to live. Who wants to go with me? ~mm

National Geography Expeditions' Photography Workshops and Expeditions

For more than a century, people have thumbed through the pages of our magazines and felt inspired by some of the best photography in the world. Now we’d like to invite you to travel to incredible places with some of the best photographers in the world. Our Photography Expeditions are designed for photographers of all levels. You’ll learn tips and techniques while exploring fascinating places with one of our renowned photographers. Our Photography Workshops, also led by a top National Geographic photographer, cater to those who seek more intensive instruction, and build photo editing, instruction, and critique sessions as well as photo assignments into each day’s schedule.

Doesn't this sound awesome?!

Another thing that makes me happy is thinking about travel. I love all the possibility, the expectation, the wonder. I love it all. Rick Steves' Travel Philosophy captures it better than I could ever say it. The intensity of travel: I love it, and I need it.

Rick's Travel Philosophy (excerpt)

Travel is freedom... one of the last great sources of legal adventure. Travel is intensified living with maximum thrills per minute. It's recess, and we need it.

Extroverts have more fun. If your trip is low on magic moments, kick yourself and make things happen. If you don't enjoy a place, maybe you don't know enough about it. Seek the truth. Recognize tourist traps. Give a culture the benefit of your open mind. See things as different but not better or worse. Any culture has much to share.

Of course, travel, like the world, is a series of hills and valleys. Be fanatically positive and militantly optimistic. If something's not to your liking, change your liking. Travel is addicting. It can make you a happier American, as well as a citizen of the world. Our Earth is home to nearly 6 billion equally important people. It's humbling to travel and find that people don't envy Americans. Europeans like us, but with all due respect, they wouldn't trade passports.

Globetrotting destroys ethnocentricity. It helps you understand and appreciate different cultures. Travel changes people. It broadens perspectives and teaches new ways to measure quality of life. Many travelers toss aside their hometown blinders. Their prized souvenirs are the strands of different cultures they decide to knit into their own character. The world is a cultural yarn shop. Back Door Travelers are weaving the ultimate tapestry.

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease

I am thankful to have found Laika's MedLibLog: A medical librarians exploration of the web 2.0 world and beyond.

I find this April 2010 article very troubling. In fact, as a lifetime straight A student, president of my high school honor society, magna cum laude college graduate, it may be more than troubling. It is devastatingly sad, because--from what other Cushing's patients tell me--it may indeed be true. ~mm

Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease (click here for full article)

Symptoms of Cushing’s disease are related to the effects of high levels of cortisol or other glucocorticoids on the immune system, the metabolism and the brain. Symptoms include rapid weight gain, particularly of the trunk and face (central obesity, “moon face” and buffalo neck), thinning of the skin and easy bruising, excessive hair growth, opportunistic infections, osteoporosis and high blood pressure.

Less emphasized than the clinical features are the often very disabling cognitive deficits and emotional symptoms that accompany Cushing’s disease. Cushing patients may suffer from various psychological disturbances, like insomnia, mood swings, depression and manic depression, and from cognitive decline. Several studies have shown that these glucocorticoid induced changes are accompanied by atrophy of the brain, and in particular of the hippocampal region, leading to hippocampal volume loss and a profound loss of synapses [2]. This hippocampal loss seems reversible [2], but are neurological and psychological defects also restored? This is far more important to the patient than anatomic changes.

If we listen to Cushing patients, who are “cured” and have traded Cushing’s disease for Addison’s disease, we notice that they feel better after their high levels of cortisol have normalized, but not fully cured (see two examples of ex-Cushing patients with longlasting if not irreversible health) problems in my previous post here. [added 2010-04-17)

Korlym: New Medication in Clinical Trials to treat Cushing's

Wouldn't this be interesting if this could really help some people. ~m


Corcept Therapeutics Nears Completion of Enrollment in Phase 3 Cushing's Syndrome Study -- Data Announcement Anticipated by Year End

MENLO PARK, CA, Jun 25, 2010
(MARKETWIRE via COMTEX) --

Corcept Therapeutics Incorporated ("Corcept"), a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders, today announced that it had enrolled 49 of the planned 50 patients in its Phase 3 trial of CORLUX(R) for the treatment of Cushing's Syndrome and expects the fiftieth patient to begin dosing next week.

"We are near our target of dosing 50 patients in our Phase 3 study of CORLUX for the treatment of Cushing's Syndrome. We remain on track to announce top line results from the trial by the end of this year," said Joseph Belanoff, M.D., Chief Executive Officer of Corcept.

Cushing's Syndrome Phase 3 Trial Nears Completion of Planned Enrollment of 50 Patients

We have dosed 49 of the planned 50 patients in our open-label Phase 3 trial of CORLUX in patients with endogenous Cushing's Syndrome, which is being conducted at 20 leading medical facilities throughout the United States. The final patient is expected to be dosed next week.

The FDA has indicated that this single 50-patient open-label Phase 3 study of CORLUX may provide a reasonable basis for the submission of a New Drug Application ("NDA") for Cushing's Syndrome. In the study, each patient's dose is titrated to clinical benefit by their study investigator and the primary endpoints (either an improvement in glucose tolerance or blood pressure) are measured at the end of 24 weeks.

We expect to announce the top-line results of this study by the end of 2010 and to submit our NDA to the FDA in the first quarter of 2011.

About Cushing's Syndrome

Endogenous Cushing's Syndrome is caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol due to either cortisol or adrenocorticotropic hormone (ACTH) production by tumors. Cushing's Syndrome is an orphan indication which most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every one million people are newly diagnosed with this syndrome each year, resulting in over 3,000 new patients in the United States. An estimated 20,000 patients in the United States have Cushing's Syndrome. Symptoms vary, but most people have one or more of the following manifestations: high blood sugar, diabetes, high blood pressure, upper body obesity, rounded face, increased fat around the neck, thinning arms and legs, severe fatigue and weak muscles. Irritability, anxiety, cognitive disturbances and depression are also common. Cushing's Syndrome can affect every organ system in the body and can be lethal if not treated effectively.

About CORLUX

Corcept's first-generation compound, CORLUX, also known as mifepristone, directly blocks the cortisol (GR-II) receptor and the progesterone (PR) receptor. Intellectual property protection is in place to protect important methods of use for CORLUX. Corcept retains worldwide rights to its intellectual property related to CORLUX.

About Corcept Therapeutics Incorporated

Corcept is a pharmaceutical company engaged in the discovery and development of drugs for the treatment of severe metabolic and psychiatric disorders. The company has two ongoing Phase 3 programs: CORLUX for the treatment of Cushing's Syndrome, and CORLUX for the treatment of the psychotic features of psychotic depression. Corcept also has a Phase 1 program for CORT 108297, a selective cortisol receptor antagonist. Corcept has developed an extensive intellectual property portfolio that covers the use of GR-II antagonists in the treatment of a wide variety of psychiatric and metabolic disorders, including the prevention of weight gain caused by the use of antipsychotic medication, as well as composition of matter patents for our selective GR-II antagonists.

CONTACT:
Caroline Loewy
Chief Financial Officer
Corcept Therapeutics
650-688-8783

SOURCE: Corcept Therapeutics

Original Marketwire article

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.

******************************

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!

***********************

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:

Did You Know You Have a Bill of Rights as a Patient?

 I encourage all of you to join and/or donate money to the Pituitary Network Association.  The serious tone is appreciated, and I always felt like they were on the patients' side.  Today, I want to share the PNA's Patients' Bill of Rights.  This disease beats down the patient, and sometimes, we forget what rights we have or should have.  Let this serve as a reminder on your journey to better health. Thanks to the PNA for all that they do.

~Melissa (emphasis below mine)

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Patients bill of rights

Preamble

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights

• Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.
  
  
• The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.
  
  
• I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.
  
  
• Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.
  
  
• I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.
  
  
• I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.
  
  
• There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.
  
  
• My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.
  
  
• I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

 

• I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

Adrenal Crisis Letter

When multiple pituitary surgeries fail to resolve the symptoms, Cushing's patients often have to move forward by having an operation to remove their adrenal glands--the maker of cortisol. They must carry around an adrenal crisis letter explaining their condition with them at all times. This will notify medical professionals about the care that is required for us. Often, a person in adrenal crisis can not think clearly or advocate for themselves. Adrenal insufficiency or adrenal crisis is very serious. It requires a trip to the emergency room for immediate care.

Thanks to you, Robin, for sharing this information on your 365 Days with Cushing's blog. We wish you the best for your upcoming bilateral adrenalectomy (BLA).

~Melissa

COOL DIAGRAM & DOCTORS SHARE WHAT THEY KNOW WITH PATIENTS

Hi everyone.

I have been doing a lot of research online, and I want to share some of my findings. With a disease this complex, there is always more to learn.

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National Adrenal Disease Foundation has the best diagram that I have seen to explain the relationship between the pituitary and the adrenal glands.

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The Swedish Neuroendocrine Institute's Pituitary Center in Seattle, Washington has held several conferences recently that are particularly important to pituitary patients. I applaud their efforts, and I am thrilled that they have posted videos of the conferences' presentations online. These very professional videos show the speaker at the podium in a smaller screen and the presentation up close, enabling us to read the "slides" as they present them. WOW--see the speaker and the screen! This makes my day!

It is also refreshing to finally listen in, like a fly on the wall, to many different physicians talking about a disease you have. We typically only see our ONE doctor about our disease. Seeing multiple doctors with in depth knowledge wraps the patients in warmth and comfort like a warm blanket. We need that.

While patients, family, and friends are obvious beneficiaries of these efforts, the real change in medical care will come when physicians see these videos. General practitioners, internal medicine, and ob/gyn doctors often see Cushing's patients first, and many don't realize what they are seeing.  Many patients walk first into their local doctors, who may only see an occasional pituitary patient, for help. Unfortunately, these local doctors are often confused about testing, diagnosis, and especially treatment plans, which is not too hard to understand since they only read about Cushing's in one "rare disease" chapter during medical school. Therefore, this online effort will give doctors a chance to learn from experts, and this will undoubtedly improve the road for pituitary patients.

I want to thank the SNIPC for sharing this helpful information with all of us.


A Patient's Road Map to the World of Pituitary Disorders, 2010.

Pituitary Symposium (Patient Presentations), 2009

Seattle Pituitary Center Patient Education Day, 2009

Physician Conference: Advances in Cushing's, 2009

You will find direct links to these presentations, as well as many important others, on this link.


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That's all for now. See you next time.
~Melissa