It’s been three weeks since I started on natural supplements to help fine tune my recovery from Cushing’s syndrome. I can honestly say that I feel pretty damn good - not 100% just yet, but I’m getting close.

Here’s a list of the improvements I’ve had since taking the supplements.

* increased energy levels
* longer, more evenly sustained energy levels
* a more restful sleep, no waking up during the night, no tossing & turning
* BIG decrease in appetite
* less cravings for foods high in sugar, fat & salt
* ability to think more clearly
* longer sustained attention span, greater attention to details
* increased libido (I have a sex drive again!)
* noticeable decrease in muscle/joint tenderness
* increase in muscle strength
* noticeable weight loss in my face and torso
* no more hot sweats

Although all of these improvements are exciting, I still have a few residual side-effects that are lingering.

TO continue reading this post, please visit my battle with cushing's syndrome.

Still feeling unbalanced after Cushing's?

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I’ve received a number of questions about the types of things my doctor recently tested me for and want to offer more insight to those who are still feeling unbalanced after Cushing’s.I’m 18 months into my recovery and although I’m pathologically cured from Cushing’s, I still haven’t feel well. Something was off and my recovery had totally stalled out. My cortisol, growth hormone & thyroid test all came back normal. I started to have flash backs to before I was diagnosed with Cushing’s and my doctor would say ‘you’re tests came back normal, we can’t find anythig wrong with you.’ No one knows my body than I do and decided that I wouldn’t stop pursuing my recovery until I got the answers I needed.

To continue reading this post, please visit my battle with cushing's.

Current Cushing's Newsletter, July 8, 2009

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Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

General Tips: Have an appointment with the doctor? Tips show what to ask

Want to Volunteer?

Help Keep The Cushing's Sites Going

Cushing's Disease: Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career

Froedtert, medical college open specialty clinic

Pituitary Gland Tumor: Symptoms of Pituitary Adenoma

Guess some endos aren't happy, either! Biopsy of adrenal masses

A bit of humor: You know you're chronically ill when you...

Endo News: Accidental death verdict on 40-year-old mum

Endo News: Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease

Endo News: Bleaching is alive and well in sunny Jamaica

Endo News: Chemicals and Endocrine Problems

Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
Robin (staticnrg) submitted an abstract to Medicine 2.0. Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.
This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).
An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.
This year's conference will be held in Toronto, Canada and will be attended by

Academics (health professionals, social scientists, computer scientists, engineers)
Software and Web 2.0 application developers
Consultants, vendors, venture capitalists, business leaders, CIOs
End-users (health professionals, consumers, payors)

Robin's abstract was submitted and accepted! WooHoo!
'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.
Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.
Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.
The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.
From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.
One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.
On the Message Boards

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

New and Updated Helpful Doctors
• Stephanie Shaw, M.D. (Round Rock, TX)
• Todd Darmondy, M.D. (Fort Lauderdale, FL)
• Adam Maass, M.D. (Rogers, AR)
• Andrew D. Scrogin, MD, (Macomb, MI)
Daniel Kelly, MD (Santa Monica, CA)

• Leamington Spa, UK
• Toronto, Canada
• Melbourne, Victoria, Australia
• Hamburg, Germany
• Lucknow, India

New and Updated Helpful Doctors

New and Updated Bios
Please note that new and updated bios submitted after July 7 have not yet been formatted for the site. They are being done in turn and will show up here in the next few days. Add or Update your bio here
Names in parens are user names on the message boards

New Bio July 6, 2009
Shon (Shon) is from El Reno, Oklahoma. Two months before her 31st birthday, she was diagnosed with diabetes. She has many Cushing's symptoms and will test for Cushing's in early August.
New Bio July 2, 2009
Shirley (Shirley) is from Tauranga, New Zealand. She has pituitary surgery in August 2008 after years of illness, weight gain, depression, etc. She is off all meds bus is still tired and sore.
Updated Bio July 2, 2009
Cynthia (cmo) is from San Francisco, CA. She updated her bio in May 2009 after an MRI showed a pituitary tumor. She was finally diagnosed with ACTH Dependent Cyclical Cushing's after all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio July 1, 2009
Amber (AmberP) is from Martinsburg, West Virginia. Several doctors have told her that she most likely has Cushing's but after testing say she has PCOS. She has taken meds for PCOS and doesn't feel any better so she is still testing for Cushing's. She has has many symptoms for at least 15 years.
New Bio June 29, 2009
Dina (Dina G) is from Newington, Connecticut. She was diagnosed with Cushing's in November 2008 and just had pituitary tumor removed on June 3rd 2009. She is weaning off steroids now.
New Bio June 29, 2009
Melissa (Melissa G) is from Evans, New York. She is not yet diagnosed with Cushing's but has many symptoms. She has an appointment with an endocrinologist on July 29 and she is undergoing more testing.
New Bio June 29, 2009
Angela (AngelaK) is from Howell, Michigan. She had gastric bypass surgery in December 2006. As more symptoms showed up her PCP treated them individually. A recent MRI shows a pituitary tumor and she is consultation with a neurosurgeon at the University of Michigan who only does pituitary operations (2000+).
New Bio June 28, 2009
Aly (Aly H) is from Poughquag, New York. She has been dealing with Cushing's for the past 4 years and has seen at least 10 different doctors. She recently had her Petrosal Sinus Sampling and hopes to have pituitary surgery soon.
New Bio June 27, 2009
Katie is from St Augustine, Florida. She is not yet diagnosed with Cushing's but has many symptoms. her cortisol level is elevated and she is undergoing more testing.
New Bio June 26, 2009
Beth (bounceback01) is from Lexington, Kentucky. She is not yet diagnosed but her endo is pretty sure she has Cushing's and they're discussion treatment options.
New Bio June 24, 2009
Robert (Robert) is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
New Bio June 22, 2009
Leah (cushiemom4) is from Goodlettsville, Tennessee. She had adrenal surgery August 8, 2009 and is now pregnant. She was diagnosed partly due to Mystery Diagnosis.

New and Updated Bios

Our own Robin Submitted this Abstract

0 comments

Robin (staticnrg) submitted an abstract to Medicine 2.0. Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

Academics (health professionals, social scientists, computer scientists, engineers)
Software and Web 2.0 application developers
Consultants, vendors, venture capitalists, business leaders, CIOs
End-users (health professionals, consumers, payors)

Robin's abstract was submitted and accepted! WooHoo!

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

On the Message Boards

Upcoming Cushing's Book

0 comments

This project was started in June 2008 and put on hold due to several "life issues", one of them being the enormous amount of time it takes to apply for non-profit status.

Here are some of the thoughts and ideas that will be in the book when finished, hopefully by December 2009.

MaryO: some people have articles on the website like http://www.cushings-help.com/helpful_hints.htm and these:

On the website here

Discuss here at http://cushings.invisionzone.com/index.php?showtopic=32996

May 20, 2009 Cushing's Help and Support Newsletter

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In This Issue

Welcome to the latest Cushing's Newsletter!

Cushing's on Facebook and Twitter

Media: Follow up to last week

Want to Volunteer?

Robin writes: Adult Onset Growth Hormone Deficiency: Phenotype and Benefits of Treatment

Video: Cushing Syndrome

Clinical Trials

Help Keep The Cushing's Sites Going

The Endocrine System

Endo News: Diagnosing Cushing’s syndrome

Endo News: Cushing’s syndrome (Hypercortisolism) from NLE Review Bullets

Endo News: Back Pain and Cushing's

Endo News: Pituitary-directed medical treatment of Cushing’s disease

Endo News: About Cushing's from OHSU

Endo News: Untreated Growth Hormone Deficiency Contributes to the Phenotype of Patients With History of Cushing's Disease

Robin writes...

New and Updated Bios
New Bio May 16, 2009
Melanie (Melanie W) is from Oklahoma. She has many Cushing's symptoms and has been diagnosed with PCOS and mild hypothyroidism so far.
New Bio May 15, 2009
Shirley (SBett) is from Ronan, Montana. After 6 years her doctor finally found a pituitary tumor on an MRI. She is testing and has high cortisol and growth hormone.
New Bio May 13, 2009
Jodi (Jodi) is from Rochester, Michigan. She had surgery to remove half her pituitary. She is now having issues with adrenal insufficiency.
New Bio May 12, 2009
angelp (angelp) is from London, England. She had her first pituitary surgery in January 2009 and a second in March 2009. She will have an adrenalectomy and radiotherapy to remove the rest of her pituitary tumor.
New Bio May 11, 2009
Sue (Sue) is from Lombard, Illinois. She has many Cushing's symptoms and her cortisol levels are very high but the source of her Cushing's hasn't been found yet.
New Bio May 10, 2009
Kate (kate22) is from Richmond, Virginia. She is not yet diagnosed with Cushing's but she is testing. She has many Cushing's symptoms.
New Bio May 10, 2009
Angie (dermpat) is from Melbourne, Australia. She is not yet diagnosed with Cushing's but is testing for cyclic Cushing's.
New Bio May 10, 2009
Vanessa is from Phoenix, Arizona. She has recently been diagnosed with a pituitary tumor and is looking for an endo.
New Bio May 10, 2009
Rachael (RachaelB) is from Charlotte, North Carolina. She was recently diagnosed with Cushing's and will be having her pituitary tumor removed in August.
New Bio May 4, 2009
Shiloh (Shiloh) is from Fort Collins, Colorado. She is not formally diagnosed. She is trying to manage her symptoms with healthy eating, massage and acupuncture.
New Bio May 3, 2009
Luisa (Luisa) is from Knoxville, Tennessee. She was originally misdiagnosed with PCOS and is testing for Cushing's currently.
New Bio May 1, 2009
Song is temporarily outside of U.S.A. She is not yet diagnosed. Someone at a party saw her buffalo hump and asked is she knew about Cushing's. Her own research says she might have this and testing shows elevated cortisol.
New Bio May 1, 2009
Alisha (gbsawyer) is from Kirksville, Missouri. She is not yet diagnosed but has many symptoms and is seeing a new endo.
New Bio April 30, 2009
Lulu is from Corona, California. She had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed. She tried Ketoconozole for a month and ended up in the hospital because the medication was affecting her liver. She is currently doing nothing for her Cushing's.
New Bio April 29, 2009
Melissa (meltizzle) is from Santa Fe Springs, California. She was recently diagnosed with Cushing's and thinks she had it since 2007.
New Bio April 29, 2009
Aly is from Arizona. She has had diabetes for 18 years and is a brand new mom. About two years ago she started getting Cushing's symptoms and is scheduling adrenal surgery.
New Bio April 27, 2009
Patty (pattycakes) is from Cincinnati, Ohio. She has many Cushing's symptoms but doctors are calling her pituitary tumor a Rathke Cleft cyst so she is still trying to get answers.
New Bio April 24, 2009
McCall (McKenzie) is from Fairfax, Virginia. She was diagnosed with central adrenal insufficiency after an ITT (Insulin Tolerance Test) and is taking 15mg of Hydrocortisone a day for the ACTH replacement therapy. She is wondering if it is possible to have both adrenal insufficiency AND Cushing's.
New Bio April 22, 2009
Kirsty (kirstymnz) is from Hamilton, New Zealand. Her doctors couldn't find the source of her ectopic Cushing's. She had a lung nodule but removal didn't help so she had a BLA (bilateral adrenalectomy).
New Bio April 22, 2009
Jeff (akflier) is from Palmer, Alaska. He was diagnosed with pituitary Cushing's in July 2008 and had surgery in August 2008.

New and Updated Bios

Third Anniversary of My Kidney Cancer Surgery

0 comments

I know that this isn't about Cushing's but I feel that my kidney cancer "counts" as a chronic disease.

The beginning recap is here: http://cushingshelp.blogspot.com/2009/05/third-anniversary-of-my-kidney-cancer.html

So, here we are 3 years later...

I find it amazing in a way. The time seems to feel like more than 3 years. Yet, had I been told I had 3 years to live back then, I would have seemed like a short time. Amazing, the tricks that time can play.

I wish I could say that I feel wonderful now but I can't. My energy levels are still so low and my temporary part-time job isn't helping.

Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take. If I take more, I start gaining weight again.

I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.

I'm also eating more than normal, I think. Not meals, but snacks, junky stuff.

Trisha Torrey wrote in her blog about Patient Empowerment a post titled An Ethical Conundrum - Should I Share This Information? One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"

Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...

I would much rather have a better quality of life than a longer one."

And it's true for me, today. What is the point of hanging around for 20 or so more years if they're just spent sleeping?

True, I'm not in pain or anything but shouldn't there be more? Am I just here to help other Cushing's patients? I think I have enough started that future folks can help themselves.

I often see studies and clinical trials for Cushies and various drug options. And the cut-off date is always younger than I am. Does this mean that possible future treatments wouldn't work for me? Am I now too old to deserve a better quality of life? What's the deal with that?

I know there are no answers to all this. Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff. I sure hope so!

But now it's time for a nap...

The Endocrine Glands

0 comments

Pituitary Gland

The pituitary gland, which is located in the center of the skull, just behind the bridge of the nose, is about the size of a pea. It is an important link between the nervous system and the endocrine system and releases many hormones which affect growth, sexual development, metabolism and the system of reproduction.

Because the pituitary controls the function of most other endocrine oval gland at the base of the brain, in the fossa (depression) of the sphenoid bone,which produces a number of different hormones . It oversees hormone production by the sex glands (the ovaries, in women), adrenal glands, and thyroid gland. Pituitary disorders (such as tumors) can cause amenorrhea -- and, thus, be mistaken for early menopause.

The overall role is to regulate growth and metabolism. The gland is divided into the posterior and anterior pituitary, each responsible for the production of it's own unique hormones.

The pituitary gland makes hormones that affect the growth and the functions of other glands in the body and secretes hormones controlling ovulation. An image of the pituitary gland.

The pituitary secrets several hormones which are as follows:

Prolactin

TSH ( thyroid stimulating hormone)

FSH ( Follicle stimulating hormone)

LH ( luteinizing hormone)

ACTH ( adrenocorticotropic hormone)

ADH ( antidiuretic hormone)

Other pituitary gland disorders.

More on endocrine glands at http://cushingshelp.blogspot.com/

More Definitions

More images

Follow-Up on Erin's Twittered Pituitary Surgery

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from http://news.barnesjewish.org/pr/bjh/Twitter-Neurosurgery.aspx

St. Louis Reporter Twitters Live Surgery at Barnes-Jewish

Contact:
Kathryn Holleman

314-286-0303

kholleman@bjc.org

April 28, 2009, ST. LOUIS – As surgeons removed part of a patient’s pituitary gland at Barnes-Jewish Hospital April 27, local St. Louis television reporter Kay Quinn Twittered their progress from the adjoining control room.

The procedure was the first surgery at the hospital to be Twittered.

Twitter is a social media tool in which members can post messages, called “tweets,” in real time which other members can follow. Each post must be no longer than 140 characters long.

(Read transcript of Kay Quinn's Tweets here)

A handful of hospitals across the country have Twittered surgeries to educate medical residents, doctors at other hospitals or members of the public about a particular procedure. The tweets are not written by the surgeons performing the operation, but usually by residents, nurses or other surgeons who are observing nearby.

(See photos here)

The joint effort between Barnes-Jewish and local NBC-affiliate KSDK-TV was part of a series of stories Quinn is doing on Erin Kelley, a 27-year-old St. Louis woman who suffers from Cushing’s disease caused by a pituitary tumor.

In the April 27 surgery, Washington University surgeons Ralph Dacey, MD, chief of neurosurgery, and Richard Chole, MD, chief of otolaryngology, used a minimally invasive approach to remove a small tumor from Kelley’s pituitary gland through her nose.
Doctors hope removal of the tiny tumor will ease or eliminate Kelely’s Cushing’s symptoms, which include weight gain and fatigue.

Quinn had interviewed Kelley prior to surgery and aired a brief video news story prior to her surgery. She plans to air a longer story on Erin and the outcome of her surgery in May.

The surgery took place in the intraoperative MRI neurosurgery operating suite on the second floor of Barnes-Jewish. Quinn sat in the suite’s command center, watching the procedure through a window and on several video monitors.

James Johnston, MD, neurosurgery chief resident, sat next to Quinn explaining the procedure as it progressed and answering Quinn’s questions. Quinn typed “play-by-play” tweets, describing the action and reporting her impressions of the scene.

Her tweets ranged from clinical (“He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid”), to observational (“All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.”) to conversational (“No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.”).

Quinn’s potential audience for the Twitter session included more than 600 persons who subscribe to or “follow” her tweets through Twitter, including Erin’s family, who followed the surgery on their laptops in Barnes-Jewish’s neurosurgery waiting room.

The session was followed and later posted on KSDK’s web site and “Cushing’s and Cancer,” a Cushing’s disease blog.

[Find Cushing's & Cancer here: http://cushingshelp.blogspot.com/ ]

Pituitary Surgery Twittered

1 comments

Erin Kelley's pituitary surgery was coverd by Kay Quinn from Channel 5 News in St. Louis. Here is the "play-by-play" of it, for those who couldn't see it live.

Good morning from the second floor, West pavilion at Barnes-Jewish Hospital!

I'm in the IMRI, room 217, and Erin is on the operating table. Everything looks great!

I'm going to spend the next few hours sending Twitter messages from the O.R., reporting on Erin Kelley's neurosurgery.

As we get started, let me say that out of respect for Erin and her family, should something unplanned occur, I will stop my Tweets.

Erin has Cushing's disease, which is an endocrine disorder that means her body produces too much cortisol.

These high cortisol levels in the blood can cause a host of unpleasant symptoms, from weight gain to excessive sweating to fertility trouble

Erin's Cushing's disease has been traced to a tiny tumor on her pituitary gland. She's having that tumor removed this morning.

The hope is, the removal of the tumor will reduce or eliminate her symptoms
Erin's been mostly troubled by the excessive weight gain.

She also gets sick a lot and is tired too much of the time.

Here's what I'm seeing now: Erin's draped on table, and until just a few seconds ago, her face was exposed.

She has fiducials all over her face. They allow doctors to use an MRI to get a 3-D GPS of her brain.

These little markers allow surgeons to locate her tumor exactly. The tumor is so small, it can't be seen on regular imaging.

Erin's face is covered now. Only her nose exposed. Surgeons will go in through her right nostril, through the spenoid sinus to pituitary.

Using an endoscope, they'll travel through this "tunnel" in the nose and sinus, right to the left side of her pituitary.

That's the side making too much cortisol. The tumor us called a microadenoma.

Sorry...sphenoid is correct spelling of the sinus. I'll have to brush up on my medical terminology. Sorry for the other typos.

Surgeons are now starting to insert the endoscope through the nose to access the pituitary. This process should take 30 mins.

All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.

I just spoke with Dr. Ralph Dacey, the neurosurgeon who will remove the tumor. He says all is going well.

He also told me, what makes this operation so different from others of its kind is the MRI machine that is located right in the room.

There are only 7 or 8 hospitals in the country with this kind of MRI capability.

The advantage is that surgeons can ensure they've removed all they need in one operation.

Without this intraoperative MRI, Erin might have had to come back for a second operation if there was any tumor left behind.

Dr. Richard Chole is the otolaryngologist working on acessing the pituitary right now. Still dark in the OR.

Dr. Jim Johnston is the chief resident helping coach me through this. He says it's dark so surgeons can see the monitors better.

It helps him place the endoscope, as they make their way back to the sinus.

No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.

He says the residents usually hook up and i-pod and force him to listen to U2....

Sorry again for the typos.

Dr. Dacey says not a lot of drama in the OR. Nurses and support staff are very professional. Not like TV show ER.

Dr. Dacey tells me the whole operation should take three-and-a-half hours.

Going through the nose is a new approach. Surgeons used to go up under the lip. Dacey says this technique means less post-op pain/scars

Pituitary Gland Fact: 1 to 3% of adult population has a pituitary tumor. Very common. Most have no symptoms

Dr. Chole is in the sphenoid sinus now, getting closer to pituitary.

He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid.

Pituitary Gland Fact: While tumors in the pituitary are common, only a very small number of people will develop Cushing's disease.

Amazing images on the monitor in the OR: we can see images being sent back by the small camera in Erin's sinus.

We can see Dr. Chole removing tissue as he goes deeper into the sinus.

I look very attractive in my scrubs and surgical bonnet.

I'll send a photo later. Cell phones don't work in here.

For the squeamish: This is not bloody at all. Very clean looking

I've got a Newschannel Five photographer by my side today. Joe Young is the best in the business. He's been at 5 for 25 years.

We'll shoot the operation and my Tweets and show the story sometime in May.

I'm making this sound easy, but Dr. Chole has to be very precise as he tunnels his way to the pituitary

The carotid arteries run along either side of his "tunnel," so he can't veer off course at all.

We've reached the bone that separates the sinus from the pituitary. Soon, Dr. Dacey will cut a window in that bone to get to the pituitary.

All is well, all is going as planned.

Big thanks to Dr. Jim Johnston. He's my John Madden...providing important medical background.

Barnes-Jewish, thanks for making this possible. This is an incredible opportunity

@kayquinn The tweets are great! Why the formal story delay until May? Are you waiting to add Erin's input post surgery?

I'll turn it into a longer story. Our Cover Stories are three or more minutes, so I'll get extra time to put it together

Surgeons never actually reach the brain, but they're very close. The pituitary is right behind the sinus at the base of the brain

Dr. Chole has done his work. Now Dr. Dacey will take over. First up, he'll make the window in the bone that's between sinus and pituitary

Then, he'll be able to go into the gland itself

Just to recap if you've just logged on: I'm reporting via Twitter from a Barnes-Jewish Hospital OR

Erin Kelley is having a tumor removed from her pituitary gland, a small gland behind the nasal sinus, at the base of the brain

She's hoping the operation will control or eliminate symptoms of her Cushing's disease

Temperature is very cool in here

Dr. Dacey is now working at the base of the skull. Very vascular area. Seeing a little more blood, which is normal

Just got an update from Dr. Chole, the otolaryngologist. He says Erin's tissue is more fragile because of her disease

They're going slower than normal because of this. The tissue bleeds more easily, so they're moving cautiously

Dr. Dacey is operating now. He's through the bone and didn't have to drill to get through. This is good. Less traumatic for Erin

Dr. Dacey is at the dura, the covering of the brain that also encompasses the pituitary. He'll go through that now to gland

Cushing's is named after Harvey Cushing, the father of modern neurosugeron. He did basic research on role of pituitary, how to treat it

@kayquinn Wow, the detail on the surgery is amazing. Are you in some kind of sterilized area to do the tweets??

@ahawkcollinger I'm not in a sterile area. I'm in a control room with a window into the OR

@ahawkcollinger But I do have scrubs and a surgical bonnet on! Adorable blue color

Hello to Erin's family on the 10th floor. Dr. Chole just came by to tell me where you are. All is well! Hope to catch up with you later

Dr. Dacey is putting a needle into the area where the pituitary is now to make sure it's the gland he's reached and not a blood vessel

Dr. D about to make an incision in the dura to get to the gland

Joe Young took the camera back in the OR to get more shots of the operation. He's also been shooting me in the observation room on Twitter

llama_3234I wonder what it would be like to be family of @erinmariekelley and watching the tweets of @kayquinn - nervous or relieving?

@llama_3234 Good question! Apparently, they can read our Tweets, but the hospital's system has blocked them from sending messages out. (I would find that tragic!)

Dr. Chole says they're anxious to send messages out but can't.

Dr. D has opened up the dura and is trying to visualize the pituitary gland

Apparently the gland is an orange-brownish colored gland, shaped like a Hershey's kiss. Very firm. (dr. j's description. love it!)

Dr. D is using a blunt instrument to feel around the pituitary now for any unusual tissue

The hope is that by taking the left side of the pituitary, disease symptoms will go away. Remaining right side should function normally

Dr. Dacey says he's in the pituitary and can see a milk nodule on the left hand side that he's removed and sent off to pathology

Now, he's going to remove the left portion of the gland

This is great news! Dr. D got what he was looking for!

Now waiting for lab to call back with a preliminary report on what that nodule was. Takes five days for the full report on it tho

There has been some bleeding, but Dr. Jim tells me its completely normal. Dr. D's been working around it all, which has taken some time

Not planning to do intraoperative MRI because her pre-op scans were normal

28 year old Erin Kelley, mother and wife, is having the left part of her pituitary removed to alleviate symptoms of her Cushing's

She had a tumor or nodule on it. The neurosurgeon just removed it and sent it to the lab

All happening on a second-floor operating room at Barnes-Jewish Hospital in St.Louis

Dr. Jim tells me the pituitary sits in a "web of veins" and that's why there can be bleeding during surgery

It's very normal. Also, because of all of the excess cortisol in Erin's blood stream, those veins have become very fragile

A lot of the left side of the gland is out now

Dr. D now looking at the bone fragments Dr. Chole took out. Looking at closing the "window" or hole already!

Left side of the gland completely out. Peeled it off. Tofu-like substance

Now, surgeons will take a little fat pad from the abdomen to also use to seal the hole

Dr. D placing gel foam used to minimize bleeding. This is all part of the process of finishing the operation

I'll be away from the computer for several minutes. Going to grab a quick interview. I'll be back to wrap it all up. Awesome experience!

Erin's surgery is complete! She'll leave any moment for the recovery room

Thanks to all who made this possible: Erin, BJ Hospital, KSDK. It was an incredible experience!

Funny to see all the lights on in the OR. It was dark for 99% of the operation

I'll keep you posted on when you can watch the story on Newschannel 5!

@kayquinn A lot of us "Cushies" are out of area. Will the story be online?

@cushings It will be on-line the day it airs. I'll let you know!

I added some of the questions that were asked as well.

Enjoy,

Jessica

I am glad I am sick and not you...

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Having something like Cushing's Disease is certainly easier being the patient. I don't mean in the sense that you feeling bad makes it easier. I am talking more in terms of emotional and all the baggage that comes with having it or having someone you love have a terrible illness or disease. I always told my wife that I was glad I was sick. I could never stand to see someone I love have this. I should have known fate was fickle.

Read the entire story at www.ShouldHaveSeenIt.com

Cushing's Newsletter, April 23, 2009

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In This Issue

Welcome to the latest Cushing's Newsletter!

Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Endo News: Dr Ted Friedman: What is Pseudo-Cushing's ?

Endo News: Dr Ted Friedman: Why Diagnosis is Less Important in Endocrinology in the 21st Century

Endo News: How many people are aware that April 8th is National Cushings Awareness Day???

Endo News: Kanzius left hope

Endo News: MASEP gamma knife radiosurgery for secretory pituitary adenomas: experience in 347 consecutive cases

Endo News: Surgical Versus Conservative Management for Subclinical Cushing Syndrome in Adrenal Incidentalomas: A Prospective Randomized Study

Endo News: Merits and pitfalls of mifepristone in Cushing's syndrome

New and Updated Bios
Bios submitted after April 18 have not yet been formatted for the web.

Add or Update your bio here

Names in parens are user names on the message boards

Latest Cushing's Help Newsletter: March 12, 2009

New Bio April 18, 2009
Anne (kittiefoster) is from San Lorenzo, California. She is not yet been diagnosed but has had multiple symptoms of Cushing's for years. She will see an endocrinologist on May 15

New Bio April 10, 2009
Debi (debkelly) is from Palmdale, California. She is not yet diagnosed but has a lot of symptoms.

New Bio April 6, 2009
Betty (bettyd) is from Cedar Hill, Missouri. Her daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

New Bio April 6, 2009
Yol is from Toronto, Canada. Her 12 year old daughter is going through Cushing's testing.

Updated Bio April 5, 2009
Beth (EFM1062) is from King of Prussia, Pennsylvania. She is not yet diagnosed with Cushing's but she has many symptoms and is testing. She has been diagnosed with Hashimoto's hypothyroid. Beth updated her bio April 5, 2009.

New Bio April 1, 2009
Sandra (sandra b.) is from Hammond, Louisiana. She had Cushing's in 2002 and is still affected by high cortisol levels. She had surgery to remove an adreno cortical carcinoma..

New Bio March 30, 2009
Tami (TamiinGA) is from Calhoun, Georgia. In May of 2008 she was diagnosed with 2 tumors on her left adrenal gland. She is on her 4th endo who just recently diganosed her with Cushing's.

New Bio March 26, 2009
Lisa Lee is from Swansea, Wales, UK. She was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH).

New Bio March 26, 2009
Jada (Jada71) is from Baton Rouge, Louisiana. She has been diagnosed with pituitary Cushing's and has been to see Dr Ludlam. A local endo told her: "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." Jada asked how he knew this and he replied, "Because it's too rare and too hard to diagnose."

New Bio March 25, 2009
Leslie is from Chislehurst, Kent, United Kingdom. She was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008. The other adrenal gland was found to be not functioning and she now hydrocortisone dependant and classified with secondary addisons. She suffers from various Cushing's problems.

Updated Bio March 24
Elisabeth (eals) is from Nanaimo, Canada. She updated her bio after pituitary surgery with Dr. Akagami at Vancouver Regional General Hospital on March 3, 2009

New Bio March 20, 2009
Jennifer (JWOLF74) is from Connecticut. She was diagnosed with PCOS about 10 years ago and had gastric bypass surgery 7 years ago. She is currently testing high and has been referred to a new endo.

New Bio March 16, 2009
Christina (happygirl) is from West Point, UT. She was diagnosed March 2009 with a pituitary source of her Cushing's Disease.

New Bio March 14, 2009
cris (cris) is from Michigan. She has finally been diagnosed with pituitary Cushing's after more than 20 years of trying to find out what's wrong. She has also been diagnosed with Hashimoto's Thyroiditis; Unstable Hypothyroidism;Hyperparathyroidism; Hypocalcemia; Severe D (hormone) deficiency; Adult GH Deficiency and Pituitary Tumor in MRI 2009.

New Bio March 12, 2009
Xchicagoan (xchicagoan) is from Huntersville, North Carolina. She is not yet diagnosed with Cushing's but has many symptoms including Adrenal Hyperplasia and thyroid issues.

New Bio March 11, 2009
Maryanne is from Sidney, BC, Canada (Vancouver Island). She has tumors on each adrenal gland and an MRI showed a 2 mm pituitary tumor. She is taking Ketoconazole until surgery

New Bio March 9, 2009
Jen (AuntieNoWay) is from Seattle, WA. All it took was one blood test and she was diagnosed. I had a tumor on her left adrenal gland that was causing her left adrenal gland to over produce the hormone cortisol. She was diagnosed but they waited 2 months to get her in for surgery and during that time her weight jumped dramatically from 180Lbs to 239Lbs and she was sicker than ever.

New and Updated Bios

the Cushing's Partner Program is LIVE!

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I’m happy to announce that the Cushing’s Partner Program is up and running on Meetup.com.

This group is for patients and survivors of Cushing’s syndrome and Cushing’s disease and is a place where patients can partner up with survivors of Cushing’s to gain an inside perspective on the recovery journey from Cushing’s. Patients who are in the early stages of diagnosis and recovery have the opportunity to partner with survivors who can share their personal insights about their recovery journey.

This group is completely virtual so people from all over the world can join without geographical restrictions. There are no physical meet ups or meetings. We meet and communicate through email and by phone.

To learn more or join this group, please visit my battle with cushing's.

Now I know...

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..why I was told to stress dose with illness. I played hero with bronchitis and only took 5 extra here or there. Tried to fight it off with no antibiotics either. Just call me joe cool .

Felt worse than any day with Cushing's. Ended up going to urgent care last Friday and stress dosing the three days like I should have. It was a rough few days but I am feeling human again and on my normal dose.

Read the entire post at http://www.shouldhaveseenit.com

What if you had a patient sponsor?

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I think this methodology could be applied to the journey of illness, like Cushing’s. What if there was a resource that could match you up with someone who has survived Cushing’s? Or who at least started the process of recovery? This person could offer you mental and spiritual support in your journey. You would be able to learn first hand from someone else’s experience.

To continue reading this post, please visit my battle with cushing's.

How my mind works waiting for a phone appointment

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Waiting for a phone call - anytime between 9 p.m. and 10:30 p.m. (CST). How nerve wracking, it's after 9, so probably don't have to worry for about 20 minutes at least. We aren't the first appointment for the night.
------------------------
Maybe I shouldn't of eaten that hamburger, tasted like cardboard anyway. Ten minutes later - feel a lot like I need to throw up. I have no idea what to expect from this phone appointment. And now it's almost twenty after, I'm getting more nervous.
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Maybe I won't answer the phone, then I won't know if the answers aren't what I want to hear. This, more so than any other appointment feels like it will be life changing, Whether good or bad I don't know. Depends on whether there are any diagnosis given out tonight.
----------------------------
This is worse than waiting for a date to show up (back in my dating days)
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Nothing holds my attention, how many games of solitaire can I play?
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Almost 9:30, was the first appointment a twenty minute or thirty minute phone appointment? No way to know. Wish I was a long distance mind reader!!
-----------
Maybe I'll hyperventilate instead of puking.
-------
I don't remember being quite this nervous before my other phone appointments. I guess I feel like more rides on this one. Bill is in pretty bad shape.
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It's 9:40, maybe I'll go to sleep and forget the whole thing!!
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Heck, I don't think I'll be able to talk anyway, I feel like I can't even breathe. Wonder if Dr. F knows how much he holds in his hands (head?)
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Geeze, my arms feel like they don't work. like not connected to my brain.
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9:50
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Wish there wasn't food commercials on TV, makes me feel ill
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10:00, maybe he won't call, maybe I don't care anymore, we can just live in limbo forever, at least I know how limbo works, Something will change with this phone call
-------
10:10
----------------
Will either of the kids be re diagnosed? What if they are re diagnosed and Bill doesn't even get a first diagnosis? What if one J is diagnosed and the other isn't? How will that affect things? Why can't I just quit thinking?
--------------
10:15, I look at the clock too often
----------------------
we always seem to be the last phone call of the night, wonder how he decides the order of the appointments?
----------------------
10:20 think I can turn off my brain? Quit thinking about when the phone will ring.
-----------------

Just read something I found through Google
Cushing’s
syndrome is a hormonal disorder caused by prolonged exposure of the body’s
tissues to high levels of the hormone cortisol. Sometimes called
hypercortisolism, Cushing’s syndrome is relatively rare and most commonly
affects adults aged 20 to 50. People who are obese and have type 2 diabetes,
along with poorly controlled blood glucose—also called blood sugar—and high
blood pressure, have an increased risk of developing the disorder.

Found it here
10:26, tired of being on pins and needles. I really might be throwing up by the time he calls! I hate this. (not saying anything bad about Dr. F, just saying I hate this all) It messes with your mind.
--------------
10:28, I think Justin is the only one not waiting. I don't think he knows the appointment got changed and is tonight.
----------------
10:29, okay, back to more solitaire. Does everyone feel like this when waiting for their phone appointment?
-----------------
Oh good MASH is on now. Must mean it's 10:30
----------------------
I'm feeling sick again, maybe it really isn't going to happen. It's 10:40. I know they don't run exactly on schedule but it's starting to reminded me of the time I stayed up until about midnight thinking maybe the first appointment ran very long. Found out the next morning through email, it had accidentally never been scheduled.
---------------------
10:47, maybe I really should give up hope
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10:52 - oddly I'm not even nervous anymore. I really don't think he'll call. But now I'm dissappointed. No answers this weekend. 11:00 - just checked Lynne's email again to make sure I had the date right. I did.
---------------
11:06 - guess I'm still holding out a little hope or I wouldn't still be watching the clock. Now my arms feel like lead and like they don't want to move. I wonder how we are so lucky to have this happen twice. Now how long before I can have a phone appointment? I got moved to today (HA) because of a cancellation, so I'm sure mine that was originally scheduled for next week has been cancelled. Wonder if it's still available. Bill promised his boss he would have something (good, bad or in between) to report after tonight. Guess not. They already wonder how this can be taking so long. They just don't understand. I'm guessing he is more disappointed than I am.
-------------------------
I was wrong - he called. Bill has Cushng's!!!!!!!!!!! (I knew it) Pituitary source. Also thinks he has aldosteronism. So will need surgery for both. Needs to get another CT of the abdomen. Kids need to get another MRI and send to McC. Both will start Keto and take some hydro. Need to get a baseline liver panel. Justin has been in a low lately (I think) so he needs to get an a.m. cortisol. Bill adds another bp med. I can start setting up pit surgery for Bill. With the kids we'll see what the new MRIs show. If McC sees tumor then it will probably be pit. We discussed BLAs for the kids. In the end it sounds like the type of surgery would be our choice, he wouldn't push. Too much to think about now and appointments to set up. Too bad it's not Monday morning and I could get the show on the road. I think I'm too keyed up to sleep. YES!!!!! Bill is diagnosed and the kids can go back to surgery!! Dr. F said we should ask if McC gives a family discount!!LOL

Cushing's Newsletter February 26, 2009

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In This Issue

Welcome to the latest Cushing's Newsletter!

What's Happening at the Organization?

Cushing's on Facebook and Twitter

Media - Amazing Kim

Want to Volunteer?

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Adult Pituitary Conference in Las Vegas

Endo News: GH replacement in patients with non-functioning pituitary adenoma (NFA) treated solely by surgery is not associated with increased risk of tumour recurrence

Endo News: Diagnosis of rare disease brings area woman hope

Endo News: Pasireotide showed promise as an effective pituitary-targeted treatment for Cushing’s disease

Endo News: Corcept Therapeutics Announces Positive Results From Study of CORLUX

Endo News: King size! Henry VIII's armour reveals he had a 52in girth - for which he paid a terrible price

Endo News: Repeated transsphenoidal pituitary surgery (TS) via the endoscopic technique: a good therapeutic option for recurrent or persistent Cushing's disease (CD)

New and Updated Bios
Note that there are still 3 more current bios to be added to this list.

Updated Bio February 22, 2009
Joselle (Jo) is from Fredonia, New York. Although she didn't present as a typical Cushie, a doctor gave her a cortisol suppression test and she was diagnosed with a pituitary tumor. Joselle was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available. Joselle was the subject of a newspaper article February 22, 2009.

New Bio February 19, 2009
Frank (franbony) is from New York. After 2 years of know knowing what was happening, she started testing and is on the long road to finding out what is wrong.

New Bio February 18, 2009
Shawna (cushings in colorado) is from Ft Collins, Colorado. She had robotic surgery July 19, 2007 to remove her adrenal gland. She lost 80 pounds in 5 months.

New Bio February 17, 2009
Amber (AmberC) is from Pittsburgh, Pennsylvania. The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007. Her first surgery was in September of 2007. She is now seeking the advice of a specialist to help get pregnant and have a baby before going back for her fifth surgery!

New Bio February 16, 2009
Sandy (jsdewys) is from Holland, Michigan. She was diagnosed with steroid-induced Cushing's and has many symptoms.

New Bio February 13, 2009
Lori (Frog) is from Longmont, Colorado. She was diagnosed with Cushing's Syndrome in December 2008 but despite all the testing, her doctors have yet to locate the source.

New Bio February 11, 2009
Lori is from Chester, South Dakota. She is not yet diagnosed with Cushing's but has had fibromyalgia for 6 years.

Updated Bio February 9, 2009
Heike (PeeQueen) is from Tallahassee, Florida. Heike has decided to go through another, third, transsphenoidal surgery scheduled for August 22, 2006. Her second pituitary surgery was June 28, 2006. It was not successful and she had to choose between a bilateral adrenalectomy or stereotactic radiation. Her first surgery was in Hamburg, Germany 13 years ago and was exploratory. She developed Diabetes Insipidus after her third surgery. She has added pictures to her bio. Heike updated her bio again after starting on Synthroid for thyroid issues.

New Bio February 8, 2009
Lorrie (lorrie) is from St Louis, Missouri. She is not yet diagnosed with Cushing's but she has had many symptoms and is testing.

New Bio February 6, 2009
Melody (Melody73) is from California. She is a newly diagnosed Cushing's patient but she doesn't yet know the origin. She has had a pituitary MRI and is awaiting the results.

Updated Bio February 5, 2009
Coleen (EyeRishGrl) is from Philadelphia, Pennsylvania. She has pituitary Cushing's and PCOS. Coleen updated her bio in February 2009 after her pituitary surgery. She has secondary adrenal insufficiency (Addison's disease) now.

New Bio February 3, 2009
Melesa is from Chapleau, Canada. Her 23 year old daughter is being tested for Cushing's and she Melesa doesn't know what to expect.

New Bio February 2, 2009
Heather (HeatherKY) is from Kentucky. In 2002, she developed a case of Bell's Palsy and was put on prednisone. In December 2008, after many years of feeling hopeless and alone, she was diagnosed with cyclical Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

New Bio February 1, 2009
Tammie (makeitgreen) is from Hemet, California. She has been diagnosed with PCOS and has taken glucophage and clomid. She is still not feeling well and is seeking a diagnosis to help with her many symptoms. She will be the guest speaker in an interview February 26, 2009.

New Bio January 30, 2009
Michelle (Map820) is from Brookfield, Connecticut. She is not yet diagnosed with Cushing's but she has many symptoms.

New Bio January 30, 2009
Ellen (esg31) is from Wilmington, Delaware. Her son has been struggling for almost a year with unexplained physical and psychological symptoms. He has been tested for thyroid issues, Cushing's and pheochromocytoma.

New Bio January 28, 2009
Michele (blakeanddbrycemom) is from Wentzville, Missouri. She has suffered from a variety of mysterious symptoms including hydrocephalus. Two MRIs show a abnormal pituitary and a meningioma.

New Bio January 27, 2009
Michelle is from Hamilton, New Zealand. She was diagnosed with Cushings Disease when she was 21. She had a recurrence 3 years later. Her ACTH levels are high again.

New Bio January 25, 2009
Gina (ginapooh1969) is from Franklin, Massachusetts. She isn't sure if she has Cushing's but has many symptoms and a pituitary tumor.

New Bio January 24, 2009
Sarah (saskgurl26) is from Biggar, Saskatchewan, Canada. She was originally diagnosed with PCOS but doctors found what they thought was a prolactinoma. She was finally diagnosed with Cushing's and had pituitary surgery November 12, 2008.

New Bio January 22, 2009
Sara (SaraR) is from Birmingham, Alabama. She is not yet diagnosed bus has been suffering from Cushing's symptoms for over 2 years.

New and Updated Bios

Part 2: Pituitary Patient Symposium at Swedish

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Date: Saturday, May 9, 2009

Location: Swedish Medical Center, Cherry Hill Campus

550 17^th Avenue

Seattle, WA 98122

Time: 9:00 a.m. – 5:00 p.m.
Fee: $50 per person (Breakfast, lunch and snacks provided;

(scholarships available)

You’re invited!

Please join us for the second annual Seattle Pituitary patient symposium, “A Patient’s Road Map to the World of Cushing’s Syndrome.” Experts from around the world will lead a day-long educational seminar and discussions focusing on Cushing’s syndrome.

There will also be opportunities for you to share your thoughts and experiences with other patients.

Register Online!
http://www2.eventsvc.com/swedishhealth?cat=Neurology

Background Information on Cushing’s

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure to high levels of cortisol on the body’s tissues. Also known as hypercortisolism, Cushing’s syndrome is somewhat rare and most commonly affects adults aged 20 to 50. Cushing's disease is a form of Cushing's syndrome, caused by a hormone-secreting pituitary tumor. About 10 percent of clinically significant pituitary tumors secrete this excess hormone. This elevated hormone level in turn stimulates the adrenal glands to produce excess cortisol. This disease process is called Cushing's disease, named after the famous neurosurgeon, Harvey Cushing.

Location/Parking/Directions

http://www.swedish.org/blank.cfm?id=202

For more information: 206-386-2502

Herding Zebras

Categories

In Memory

Fave me

Disclaimer

Blog Archive

Cushing's Help Newsletter, September 16, 2009

Current Cushing's Newsletter, July 29, 2009

Sometimes natural is the best way to go

Still feeling unbalanced after Cushing's?

Current Cushing's Newsletter, July 8, 2009

Our own Robin Submitted this Abstract

Upcoming Cushing's Book

May 20, 2009 Cushing's Help and Support Newsletter

Third Anniversary of My Kidney Cancer Surgery

The Endocrine Glands

Follow-Up on Erin's Twittered Pituitary Surgery

St. Louis Reporter Twitters Live Surgery at Barnes-Jewish

Pituitary Surgery Twittered

I am glad I am sick and not you...

Cushing's Newsletter, April 23, 2009

the Cushing's Partner Program is LIVE!

Now I know...

What if you had a patient sponsor?

How my mind works waiting for a phone appointment

Cushing's Newsletter February 26, 2009

Part 2: Pituitary Patient Symposium at Swedish

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St. Louis Reporter Twitters Live Surgery at Barnes-Jewish

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