Sunday, May 31, 2009

Pituitary Blog Alert, May 31, 2009

Miss Diagnosis: Cardiology, Add Another Doc
By Hi, I'm Rene
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

Saturday, May 30, 2009

Cortisol Blog Alert, May 30, 2009

Another Day in the Life of a Train Wreck: One week, one day post op
By Gracie
Even though they were not overly abnormal, he said it was still what was needed to get my over production of cortisol stopped. So, I guess maybe both of them had a few too many milk and pepsi's. LOL! This was the aboslute roughest ...
Another Day in the Life of a Train Wreck - http://adayinthelifeofatrainwreck.blogspot.com/

Friday, May 29, 2009

Help raise awareness for rare diseases (like Addison's and Cushing's!) http://ping.fm/IMOCg

A Novel Approach to Self-Empowered Healthcare

Learn about Cushing's and share your symptoms at http://curetogether.com/Cushings-Disease/

Cushing's Disease is an endocrine disorder caused by high levels of cortisol in the blood from a variety of causes. It is relatively rare, affecting 10-15 out of every million people. (Sources: Wikipedia, NIDDK)

At this writing 6 CureTogether members report having Cushing's Disease. The most common symptoms are: Weak muscles, Irritability, Bruise easily. The most common treatments are: Pituitary surgery, Radiation, Cortisol-inhibiting drugs.

Have you been diagnosed with Cushing's Disease?

See how your symptoms compare with others.

Not sure if you have it?

Look at the list of Cushing's Disease symptoms to see how well your symptoms match.


Or, if you think it might be something else, enter your symptoms below to see a list of matching conditions:.

Want to know how to feel better?

Look at treatments others have tried and see stats on how satisfied they are.

~~~~~~~~~~~~~

Have you heard of CureTogether? We recently stumbled across this website and after trying it out, decided that it most definitely rates a closer look.

cure-together

CureTogether describes itself as a place to help people “anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research”.

While the site is still new, it’s gaining momentum with more than 3,000 members. The website is “currently funded by its founders, and does not host or receive funding from advertising”.

They have a simple profile where you can start by adding data you want to track such as weight, caloric intake, sleep, and excercise. A nice feature is that you can add anything else you would like to keep track of such as mood or water intake - anything you think is important for your particular situation.

Something we really like is that you can view and edit this data on your Google search page (to learn how to use iGoogle, click here).

igoogle

On your bio page, you can tell your story and add details such as location, avatar (picture) and date of birth. This is, by default, kept completely private though you have the option to share your details anonymously.

So far there are 289 conditions on the site and CureTogether highlights the “most active”. Back pain, anxiety, and depression are among the top five. Click on back pain and you will get a list of user generated symptoms. You can check off whether or not you’ve experienced it as well as the severity level. If you don’t see something that you are experiencing, it’s easy to add it.

add-a-symptom

Next are treatments. What have you tried so far? For back pain ice packs, stretching, and vicodin are some of the options. Again, it’s easy to add to the list. Now you can document what you think (or know) causes it. Does your back hurt after sex, after sitting for long periods of time, or from an injury?

treatments

The related conditions portion list the most commonly reported ones first. The fact that anxiety is number one and depression number two for back pain gives us some food for thought! This ability to compare user data is where CureTogether really shows its potential usefulness.

A this point, you can view resources, document how you are feeling (much like Facebook updates, this allows you to share status updates with your friends), invite friends, or revisit any of your health pages.

For those living with chronic pain, or even those who just want to keep track of their day to day health, CureTogether offers some unique tools.

Check out their site here and let us know if it works for you!

Cushing's locations page updated, new people added. http://ping.fm/pHFE2

Upcoming Cushing's Book

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

Wednesday, May 27, 2009

Abstract: Outcome of transsphenoidal surgery for Cushing's disease: A high remission rate in ACTH-secreting macroadenomas http://ow.ly/9uZo
RT @jensmccabe Hospitals, what would you do if a national law were passed making variance reporting part of pts' records? http://ow.ly/9uVU

Cushing's Blog Alert, May 27, 2009

Another Day in the Life of a Train Wreck: 6 days post op
By Gracie
I have been diagnosed with Cyclical Cushing's disease. The objective of my blog is to help others who come behind me. It's also an easy way for family and friends to check in on me, to see what is currently going on in my life. ...
Another Day in the Life of a Train Wreck - http://adayinthelifeofatrainwreck.blogspot.com/

Monday, May 25, 2009

Cushing's Blog Alerts, May 25, 2009

Cushing's & Cancer
By MaryO
Because I had very little support for my symptoms, diagnosis and surgery, I decided to try to make things a little better for other patients and started a support site called Cushing's Help and Support in 2000. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

 

Cushing's Family
By judycolby
Actually, I found a picture on some medical website about Cushing's that showed a hump that looked just like Justin's. I used to walk past him and poke him in the back and tell him to straighten up having no idea what was really wrong. ...
Cushing's Family - http://judcol.blogspot.com/

A Cushie Blogger's Latest Post

 

Just Another Day in Paradise: Dear Family and Friends...
By Christina
Cortisol is a hormone produced by the adrenal glands and is vital to regulate the body's cardivoascular functions and metabolism, to boost the immune system and to fight inflammation. But its most important job is to help the body to ...
Just Another Day in Paradise - http://christinapay.blogspot.com/

Sunday, May 24, 2009

Friday, May 22, 2009

Wednesday, May 20, 2009

May 20, 2009 Cushing's Help and Support Newsletter

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

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

Tuesday, May 19, 2009

From the UK Diagnosing Cushing’s syndrome http://ping.fm/DbQ1p

Cushing's Alerts, May 19, 2009

Cushing's Family
By judycolby
As I was working, I felt really strange - it occurred to me today how much time I have spent thinking of things related to Cushing's. I would run scenarios through my mind in regard to setting up appointments, the appointments ...
Cushing's Family - http://judcol.blogspot.com/

 

Diagnosing Cushing's syndrome
OnMedica - London,UK
Cushing's syndrome is the term used to describe the clinical state of increased free circulating glucocorticoid concentrations. Traditionally, the incidence ...

Monday, May 18, 2009

9 new Cushing's bios added. 5 pituitary, 4 not yet diagnosed but testing. http://ping.fm/d1rDq
Cushing’s syndrome (Hypercortisolism) from NLE Review Bullets http://ping.fm/tFMsF

Sunday, May 17, 2009

Cushing's Alerts, May 17, 2009

The Opening Door: I am back! Kind of! And let's start Weaning!
By Erin Kelley
I chose the title "The Opening Door" because every day for me during my treatment and recovery from Pituitary Cushing's Disease means one door closing - and another opening. During this journey in my life I strive to focus on the ...
The Opening Door - http://theopeningdoor.blogspot.com/

 

NURSES' PAD: Online Training and Seminar Updates for Nurses: NLE ...
By Cleansweep RN
Secondary Cushing's syndrome or Cushing's disease is caused by functioning pituitary or non-pituitary neoplasm secreting ACTH, causing increased secretion of glucocorticoids. Iatrogenic is caused by prolonged use of corticosteroids ...
NURSES' PAD: Online Training... - http://nursingpad.blogspot.com/

Tuesday, May 12, 2009

Erin's twittered pit surgery interview on TV and online tonight 10PM CST at http://www.KSDK.com

Monday, May 11, 2009

Cushing Syndrome Video

This video explains the complete workup of Cushing Syndrome, the causes, the diagnosis, and the full management.

 

Sunday, May 10, 2009

Cushing's Blog Alert, May 10, 2009

Autoimmune thyroid disease and rheumatoid arthritis? | Taming My ...
By admin
If you know that you have an autoimmune condition it DOES increase the statistics of future autoimmune problems like Lupus, Addison's, RA, Cushing's, etc. (many more). Because your body has already proven itself to be unreliable in it's ...
Taming My Arthritis - http://www.tamingmyarthritis.com/

Friday, May 8, 2009

Addison's disease after 154 years: modern diagnostic perspectives on an old condition http://ping.fm/sDfuW
Pituitary-directed medical treatment of Cushing�s disease http://ping.fm/OPmTe

Wednesday, May 6, 2009

Next Scheduled Cushing's Chat tonight Wednesday, May 6, 9PM Eastern. The Chatroom is open 24/7. http://ow.ly/4Zea

Cushing's Blog Post, May 5, 2009

Cushing's Family
By judycolby
While he did eventually tell us he was just for after care (if needed) he seemed to doubt Justin's dx of Cushing's, questioned whether we were actually doing the right thing by having a BLA. Wondered if there wasn't meds available for ...
Cushing's Family - http://judcol.blogspot.com/

Tuesday, May 5, 2009

Sunday, May 3, 2009

Cushing's Blog Alerts, May 3, 2009

Cushing's Family
By judycolby
I really want to put the kids' Cushing's behind us, yet I feel reluctant to go. I'm not sure what's up with me at the moment. Justin is off work now until sometime after his surgery. He went with us to take Dad to lunch today. ...
Cushing's Family - http://judcol.blogspot.com/

 

Miss Diagnosis: What's In A Name?

By Hi, I'm Rene

It's funny; you tell someone Cushing's Disease, and you might as well have said you have a headache. You tell them cancer and the world changes. I'm not diminishing cancer by any means, but it would be nice to have a "label" that would ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

 

Medical Videos: Endocrine and Metabolic Disorders
By anuvinu
Cushing's Syndrome o Glucocorticoid (cortisol) hormone excess * Congenital Adrenal Hyperplasia (CAH) o Deficiency of cortisol * Adrenal Insufficiency o Acute Adrenocortical Insufficiency o Chronic Adrenocortical Insufficiency (Addison's ...
Medical Videos - http://med-videos.blogspot.com/

 

waterdragon91: Cushing's
By Nini
If I have Cushing's Syndrome, which i check out for almost ALL of the symptoms and it IS caused by corticosteroids, then my doctor may lower my dose of prednisone which would make me all types of happy. Ugh PMS, i am so moody latelyyyyy ...
Nini - http://waterdragon91.livejournal.com/

Saturday, May 2, 2009

Cushing's Blog Alerts, May 2, 2009

2 from Cushie Blogger - amazing!

Cushie Blogger: Pituitary Blog Alerts, May 1, 2009
By MaryO
Cushing's & Cancer: Cushing's disease has many signs. By MaryO. Surgical removal of the tumor — pituitary or adrenal — is the cure in most instances. Your daughter must undergo more tests to locate the source of the trouble: the ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

 

Cushie Blogger: Follow-Up on Erin's Twittered Pituitary Surgery
By MaryO
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. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

 

Miss Diagnosis: A Surgery Date, Finally!
By Hi, I'm Rene
It seems that those who have had Cushing's the longest and are in the "worst" condition are the ones who take the longest to recover. That doesn't give me much hope for a speedy recovery. I think Alex has probably had it since birth and ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

Friday, May 1, 2009

Pituitary Blog Alerts, May 1, 2009

Prolactinoma | Endocrine Health
By DK Mangusan Jr., PTRP
Prolactinoma is a type of benign tumor that affects the pituitary gland. Prolactin is one of the hormones produced by the pituitary. It acts to stimulate the breast to produce milk during pregnancy. After the baby is delivered, ...
Endocrine Health - http://endocrinehealth.blogspot.com/

 

Cushing's & Cancer: Cushing's disease has many signs
By MaryO
Surgical removal of the tumor — pituitary or adrenal — is the cure in most instances. Your daughter must undergo more tests to locate the source of the trouble: the pituitary or the adrenal. Scans and ultrasound pictures can pinpoint ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

 

a tumor in the pituitary gland or hypothlamus is protruding ...
By admin
One Response to “a tumor in the pituitary gland or hypothlamus is protruding inferiorly and compressing the optic chiasma?” Jen S | 1/05/09. Loss of peripheral vision. Share Your Thoughts. You must be logged in to post a comment. ...
Cure Tumor & Cancer - http://andridaulay.com/rs/

 

what does RH stand for? - Stand For
By admin
Rh stands for any of several hormones produced in the hypothalamus and carried by a vein to the anterior pituitary gland where they stimulate the release of anterior pituitary hormones ,each releasing hormone causes the anterior ...
Stand For - http://www.stand-for.com/

 

THE DUNHAM'S est 1993: Celebrating 10 years!!! Surgery date April ...
By The Dunham's
The optic nerves, the hypothalamus and of course the pituitary gland. Dr. Hamilton was concerned prior to surgery that the tumor was adhered to the hypothalamus and would not go near the hypothalamus to remove any tumor cells as this ...
THE DUNHAM'S est 1993 - http://dunhams1993.blogspot.com/

Follow-Up on Erin's Twittered Pituitary Surgery

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 Cushing's Blog Alert

 

MaryO'Note: Since this is a blog, I have no idea how accurate any of this info may be...

The most common secreting pituitary adenoma « Brain Tumor Surgery ...
By braintumorsurgeryindia
This is the most common secreting pituitary adenoma. If the tumor secretes growth hormone, giantism or acromegaly occurs. ACTH secretion causes Cushing's disease. The rare TSH secreting tumors cause hyperthyroidism. ...
Brain Tumor Surgery India Blog - http://mybraintumorsurgeryindia.com/

Cushing's disease has many signs http://ping.fm/OpnuU