Cushie Blogger

Have You Been Diagnosed With Cushing's? Earn $125 or $250

2012-01-25T13:18:00.001-05:00

We invite you to help us create better information, tools, and resources

for people with Cushing’s Syndrome

How: Share your opinions and give input in a one-on-one confidential interview. Your opinions will remain confidential. The overall results will help others with Cushing’s Syndrome.

When: Market research interviews can be conducted by phone or in-person, in a location near you. The interview will last approximately 45 minutes.

If you are interested in a phone interview or in-person interview, please contact Clair Carmichael Johnstone (see details below). More information (including cities and locations for in-person interviews) will be provided on the phone.

Am I Eligible? If you’ve been diagnosed with Cushing’s Syndrome and still experience symptoms of Cushing’s you are eligible to participate. Cushing’s Syndrome includes: Cushing’s Disease, ectopic Cushing’s and adrenal Cushing’s. Patients should have been diagnosed within the last 10 years.

At this time, patients who are in remission, were diagnosed more than 10 years ago, or have had a bilateral adrenalectomy are not eligible for research.

Details: Participants eligible for market research will be asked to participate in the 45-minute interview. Patients participate also receive an honorarium (payment) for your time. Those who participate in an in-person interview will be compensated $250 and those who choose a phone interview will receive $125 for their time.

Why? Corcept Therapeutics is interested in hearing from people who suffer from Cushing’s Syndrome in order to improve treatment and information available. This can lead to improved education and resources for those with Cushing’s and physicians treating Cushing’s.

How do I find out more?

If you have questions or would like to participate, please contact Clair Carmichael Johnstone at:

Toll-free number: (800) 856-6706, or

E-mail: cushing@compasshc.com

Please provide your name, phone number, and the best times to reach you so we can follow up promptly.

We have been Nominated for a Health Activist Hero 2011!

2012-01-02T19:37:00.001-05:00

We were nominated for a wego Health Activist Hero 2011 award!

Our Health Activist Awards program will award Health Activists for their outstanding achievements in online health leadership and advocacy in 2011.

Health Activist Hero 2011

Who has changed your life? There are some people who can truly change your entire outlook on life just with their story, their dedication, their words, and their encouragement. Who is your Health Activist Hero? Who would you like to thank and why? For so many Health Activists, impacting the life of just one reader is worth more than 1,000s of page views. This award is an emotional one but will yield some incredible stories.

Do you know a Health Activist who has changed your life, your condition, or your Health Activism? Thank them by recognizing them as a Health Activist Hero!

Vote for us here: http://info.wegohealth.com/hero-2011

Our nominating post:

Award: Health Activist Hero (http://info.wegohealth.com/hero-2011)

Link: https://www.facebook.com/mary.oconnor

Reason: If it wasn't for MaryO's hard work in creating an online community I don't know if I'd have made it through all these years. She's a behind the scenes kind of person, she doesn't ask for much and often winds up on the periphery but despite her own health challenges she gives and gives and gives and has helped thousands of people.

Criteria for Online Support Group

2012-01-01T15:13:00.001-05:00

I am a nurse practitioner student and I need your help. I am trying to develop a set of criteria to give to my patients to help them find an on-line support group. I want to find out what on-line support group users like or dislike about on-line support and what you look for in a good group.

My research was prompted by an amazing patient who has just been diagnosed with cushings after several years of profound symptoms. I wanted to refer this patient but was unsure of what to tell her to look for.

My research is due in March of this year and any help in responses would be greatly appreciated.

Thank you. Carol

Note: please add comments to this question below.

The Cushie.info Blog got a Top Cushings Syndrome blog award!

2011-09-21T11:06:00.001-04:00

Read the blog here

RegisteredNurse.org

2nd California Pituitary Hormonal Health Symposium, October 22, 2011

2011-09-18T23:41:00.001-04:00

Sharmyn McGraw writes:

Hey Everyone!!! I’d like to invite all of you to help me spread the word about our Hormonal & Pituitary Health Symposium Oct. 22, 2011, Santa Monica CA. It’s free and a continental breakfast and box lunch is included and the best part is hearing from our team of neuroendocrine experts and meeting many new friends. To register and for a copy of the events schedule www.brain-tumor.org or call Pat Fitzwater at (805) 300-9154 I hope to see many of you there!

Peace and great health all!

Sharmyn

Learn about your Master Gland

This symposium aims to educate patients, their families and the public about the importance of the "Master Gland" in health and in illness.

Topics covered will include: the basics of pituitary gland function and malfunction; signs, symptoms and treatment of hormonal excess and hormonal deficiency; epidemiology of pituitary adenomas and related brain tumors; treatment options for pituitary tumors (acromegaly, Cushing's disease, prolactinoma and non-functional adenomas, craniopharyngioma) including endonasal endoscopic surgery, radiotherapy and non-surgical therapies.

Additional topics will include optimizing your access to care, insurance issues and finding the appropriate pituitary specialists, as well as information about clinical trials in pituitary hormonal disorders

More information and registration

Cushings Help is 11 Years Old Today!

2011-07-21T11:59:00.001-04:00

It's unbelievable but the idea for Cushing's Help and Support arrived 11 years ago tonight. I was talking with my dear friend Alice, who runs a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, Wiki, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Changes to the CushieWiki

2011-07-07T06:33:00.001-04:00

We have been getting spammers lately, so changes have had to be made. Anonymous editing is no longer possible. Even signing up for an account on the CushieWiki isn't enough to keep the spam folks at bay, so... if you want to post/edit/create, you'll need to get permission first.

To do so, send a PM to MaryO through the message boards, send a note through the Contact Us page or send a message through FaceBook.

I am sorry for all the annoyances that these spam folks make us go through.

Added to the Cushie Bookstore again...

2011-06-26T12:13:00.001-04:00

Added to the Cushie Bookstore again:

MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age. This book gave me such hope and inspiration when I felt I was so alone with my "stuff". It still sits on my bedstand and I read it when I'm feeling down and helpless.

I've bought copies for everyone I know who might benefit from this - and that's practically everyone! Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.

So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .

We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele

Book Description
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.

With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.

About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

Next Interview, Thursday June 23 at 9:00 PM eastern with Pat Gurnick

2011-06-22T20:28:00.001-04:00

The Call-In number for questions or comments is (646) 200-0162.

Join Pat on THURSDAY JUNE 23 AT 9PM EASTERN

My name is Pat Gurnick. I had a Pituitary Tumor (Cushing's Disease) removed (Macro 1.4 size) by Dr. Kelly at UCLA.

This has been a long journey for me. In 1990 I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia, and Environmental Illness/Multiple Chemical Sensitivities. I was a Needs Assessment and Referral Counselor at Charter Hospital. I than went to work for Brotman Hospital as a Drug and Alcohol Counselor, with their day treatment program for Chronic Mentally Ill Substance Abusers, but by 1992 I was so ill I went on disability. I could not read or write for over a year, so sick. I started a support group, WEBSITE (www.montagestudio.com/cefca) and phone hotline in 1993, to give myself a reason to live. I had such cognition difficulties and fatigue, to name a few symptoms, that I don't honestly know how I achieved this!

In 1994 I thought I was in remission, little more functional and decreased Fibromyalgia pain; yet, I also went through premature menopause at that time, age 35 (I am 45 now), which I now found out was the cause and beginning of a Pituitary Tumor/Cushing's Disease! I was single and I had no children. My doctor figured this is when the tumor developed/high cortisol, to compensate for my crashed adrenals (HPA Dysfunction common to CFIDS Patients).

I tried so hard to lose the weight all those years, and the past few years people were always asking me when I was "due" for my stomach was so distended. In addition, I was anxious and depressed, experienced nausea most of the time, facial hair, moon face, hump/fat pads ,and many of the other Cushing's effects. The Rheumatologist just attributed this all to getting older and osteoporosis (which I had a severe case by this time due to Cushing's - little did I know!).

No one picked up on the Tumor situation until last October, 2003. I had other health problems, especially mold injury (from water damage in my home) and had to leave with basically the clothes on my back in August. My life was upside down. I was stressed and went to see a chiropractor to ease my tight neck. I knew something was wrong when the x-rays showed fat pads not bone as my old Rheumatologist had claimed.

By October 2003 a New doctor (been to so many through these years trying so many things to get well) wanted me to have an MRI done when I showed him my x-rays and told him of my concerns. I was not willing to give up and attribute it to old age! He stated he thought I had Cushing's disease and wanted to test me. The tumor was clearly seen on the scans, and Cushing's Disease confirmed. I had gained 40 pounds by this time, and looked totally different, as you can imagine.

After I was diagnosed, I went to many healers, tried holistic things, which didn't heal me, but got me in good shape for surgery a year later. Thank God it was a slow growing tumor, because it was close to my eyes and sinuses, and waiting any longer would have been detrimental to my health. I had surgery performed December 17, 2003, at UCLA with Dr. Kelly. He has been very kind and patient with me while I tried alternative treatment, knowing surgery would be eminent.

As for my hospital experience, 2x's I had adrenal insufficiency and was terrified. I had no idea what to expect, fainting on the floor, staff all around me when I woke up, going in and out of consciousness, frightened I would go to sleep and never wake up, wanting to throw up all the time, could not walk, dependent on oxygen mask (trouble breathing) and I.V., using a bed pan, and had a longer stay than anticipated. Plus, hurting from stitches on my stomach, and was told was used for fat during surgery; had cerebral brain fluid leakage and titanium mesh was placed in my head. Little did I know that was only the beginning. I did not understand the post-op situation (cortisol withdrawal symptoms, medication side effects, emergency bracelet, light headedness, to name a few).

So, I have been looking for answers and finally found you all! I am not alone! It is ONE DAY AT A TIME now, and I am looking forward to better days ahead.

Update: April 15, 2004

I am a wreck since surgery, going from depression to anxiety, hormones bouncing off the walls. hot flashes, cognition problems, incontinence (cortisol weakens muscles including the bladder), and sometimes crippled to the point I cant even stand to brush my teeth. I am struggling with continual weakness, edema, painful/swollen hands and body. Now, ailments are popping up as the high cortisol decreases in my body. I have a fatty liver and gallbladder disease (cortisol can do this), Rheumatoid Arthritis (Cortisol can do this break down the muscles and joints), heart irregularities, high cholesterol, to name a few. Cortisol can cause so much damage, and I feel like I am left in pieces all over the floor, running from doctor to doctor to patch me up. Having little energy but dragging myself all over town to find some relief; hoping for a solution.

I have only lost 5 pounds but my mustache is gone, which is good news. Plus, my osteoporosis has gotten better and is now osteopenia status; in such a short amount of time. Taking out that tumor saved my life!

Update: December, 2004

It has been a year since my pituitary surgery. I have lost almost 40 pounds. I think more clearly and feel more confident. Look like a real woman again! Sure, I still have my mood swings, cortisol still low (but off cortef now), have phsycial pain (decreased 60% due to Lexapro antidepressant), fatigue (limits me on some days), and need to monitor my stress level or my immune system goes down quick and I get sick. My body is not the same. I am way more sensitive. But, I changed my lifestyle to fit my needs. I moved from Los Angeles to Boulder, Colorado, for the slower pace and beautiful mountains. My adrenals are not strong, and I have to be careful to take it easy or I have symptoms of adrenal burnout. However, I am so glad to be alive, mentally functioning, and taking walks again in nature!

Dr. Kelly at UCLA was fantastic, and I will always be grateful for his excellent expertise in ridding me of the tumor. I have a new chance in life. I do look over my shoulder, ever reminded that it can come back, having tests every 6 months for years to come. But, I have learned from this experience that really life is to be lived one day at a time anyhow. Appreciate each day as it comes, living in the moment, making the best of the time I have.

I look at life and love differently now. I left a stuck relationship, moved to a place that will bring me more peace and joy, empowered myself, being my best friend, having more fun and laughter in my life. I plan on continuing with my goals, which were stopped by the tumor, doing what matters to me instead of being co-dependent. I am important. I deserve the best. I have been given a 2nd chance and I will take it for all it is worth!

Update: September 16, 2007

There isn’t a day that goes by when I don’t think of my experience with Cushing’s Disease. I remind myself that I don’t have the tumor anymore, than I look out at the sunshine lighting up day and take in a breath of fresh air, so grateful to be alive.

Yes, I catch myself from wandering back to the Cushing’s memories: when I felt like a Cherub, blown up and uncomfortable in my own skin, emotional, feeling like my blood was racing in my veins, breaking my toes, pimples like a teenager, and the dark mustache I knew everyone could see! I still look for those returning signs, relieved that they have not come back. I was told by my surgeon, Dr. Kelly, that the tumor would not return. When fear grabs me, during infrequent times of fatigue and a rush of anxiety, I reassure myself that these are only aftereffects not the tumor returning. I have my cortisol levels tested every year to confirm this fact, and my levels are normal. However, I went through ‘Post Traumatic Stress Syndrome’ from all the medical trauma I endured! It took 8 years for the doctors to finally diagnosis this disorder! You can imagine all the ailments they told me I had or that it was all in my head. I was running around to doctors begging for answers but feeling so discouraged, hopeless, and helpless. I tried many medications hoping for a solution, but none came. I did many holistic treatments, to no avail. Little did I know that I suffered from Cushing’s Disease/Pituitary Tumor!

One day I walked into a Rhumatologist’s office, Dr. David Hallegua, seeking help for my Fibromyalgia and Chronic Fatigue Syndrome, and the doctor exclaimed I also had Cushing’s Disease because of the obvious physical signs I exhibited. This is all a memory today. The once obvious ‘fat’ humps on my shoulders and neck are gone. I dropped most of the weight, my face structure is visible again, my hair healthy as is my skin, my moods finally balanced from the ‘bipolar’ roller coaster of emotions I previously tried to control - time healed this (I am not on any antidepressants), and my hormones are balanced without hormone replacement therapy. I know how lucky I am, believe me, I am thankful!

Yes, I have realized this illness has also given me an amazing gift, one of appreciation for every bird in the sky, every flower that bloomed, every whiff of baked bread, everyday I could walk by the Boulder Creek with vigor, and how I gradually was able to retain information to the point that I could multi-task again! Each little thing has been a blessing. I have much gratitude for being alive, remembering the days when I had Cushing’s but didn’t know it and negotiated with God dark agreements...looking back I am glad that I didn’t follow through. What lesson’s has this teacher left me with? I live in the moment now, present, not running to the past or the future, just appreciating today. Ah, I have today to live! I have come back into my body, proud of my curves, my soft skin, my long hair, my searching eyes, feeling the calm peacefulness that rests in my heart, and the relaxation in my body. It feels good to experience positive sensations, wanting to walk again around the block, to go shopping for clothes, taking a swim in the heat of the summer, all dressed up going to a dinner party with friends, taking meditation classes at the Boulder Shambhala Meditation Center. I have a social life again! For so many years I hid in my house, heavy, unhappy, and discouraged. I didn’t know I had an illness, and all I thought was, “who would want me like this?”. Yet, there was a sliver of hope, for I never stopped trying to figure out what was wrong, desperate to find a solution, knowing all along that I was NOT just fat and growing older, at the age of 35! My body was betraying me, that was clear. The lesson, to not give up, to have faith. My warrior came out in me. I became a stronger woman through all of this, and moved through the challenges that were dropped in front of me, bomb by bomb. I came through the surgery with flying colors, hard but I did it! Winning round one! Round two, dropping pound after pound of fat. Round three, learning how to walk and breathe easy again. Round four, winning the grand prize, learning how to relax, and to be happy that I am alive.

I was able to provide counseling services again , and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 or pat@caringcounselor.com

There is life after Cushing’s Disease!

Warmly
PAT GURNICK, CLC
Certified Lifestyle Counselor
Psychotherapist
Director,CEFCA Website Support
www.caringcounselor.com

Pat's photos:

The only picture I have after Cushing's, a number of years ago, gained 25 more pounds since then. [Photographer: Pat's family]

Picture of me and my sister at Thanksgiving - right before surgery. [Photographer: Pat's family]

Picture of me at home, right after surgery, with my kitten sleeping on my stomach. [Photographer: Pat's family]

Picture of me with my Cat JACK 4 months after surgery.
You can see my face has gotten thinner, but my body is still Cushy. [Photographer: Pat's family]

April 2006 [Photographer: Pat's family]

Glad to be alive!!! September 2007[Photographer: Pat's family]

Recovery_from_Cushings.doc Download this file

2010-11-15_16-43-55.mov Watch on Posterous

The Call-In number for questions or comments is (646) 200-0162.

THURSDAY JUNE 23 AT 9PM EASTERN

Can anyone help Shenner?

2011-06-21T22:59:00.001-04:00

Had two borderline high urinary cortisol tests and all symptoms cushings. Salivary was taken once and negative. Did anyone else have this experience? Possible that still have cushings?

http://cushie.info/index.php?option=com_quickfaq&view=items&cid=1:abcs-general-questions&id=47:ive-been-reading-about-the-salivary-cortisol-test-what-is-that-is-it-accurate-&Itemid=111#comment-50

Current Cushie Bloggers

2011-06-20T22:00:00.000-04:00

Cushie Bloggers

Cushie Bloggers are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.

We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.

If you think that you might qualify as a Cushie Blogger but are not a member of the message boards for whatever reason, please email me with your blog information and we'll check it out to see if it can be included here.

Current Cushie Bloggers
ADDFlower: A Basket For My Case
I haven't posted anything in forever because I have a tumor in my pituitary gland. You read that right... I've named it Count Rugen....
Bev (BookYeti): My 'Court Case' Against Cushing's
Will Cushing's be guilty as charged? I will be finding out soon. I am still gathering evidence to fight my case and put this horrible disease on trial.
Brandon (jediknight36): The Weary Zebra- Cushing's Patient w/o Insurance
My journey to being diagnosed with Cushing's Syndrome and getting treated... with out insurance.
Christina (happygirl): Just Another Day in Paradise
A little of this and that from my world . . .
Danielle (Smilez133): Life With Cushing's
My journey through diagnosis and treatment of Cushing's Disease
Our Newest Blogger! DragonFlyJacquie.com: My Cushing's Journey
I am not sure exactly when my Cushing’s journey began. It is difficult to pinpoint when the disease took hold of my body as it is the type of disease that creeps up. The early symptoms are so vague and mimic so many other conditions that it is difficult to diagnose. I do know that I transformed into a whole other person who I did not recognize within a few years.

Ferol (FerolV): FerolV's Blog
Diagnosed with Cushings Disease in 05, after YEARS of mis-diagnosed symptoms, I want to share my experience with others.
Gracie (Fatnsassy): Another Day in the Life of a Train Wreck
Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!...
Jenny (jennyr): Waking up from an Endocrine Nightmare
I'm a stay at home Mum who has been struggling with finding help for my family, who suffer from a wide range of Endocrine problems. As our journey continues, I hope our experiences may serve to help other families who find themselves in a similar situation.

Judy (judycolby): Cushing's Family
Cushing's Syndrome - our family journey
Kay (casperslove): Cushie Mama
I'm just a mom who was dealt the diagnosis of Cushings disease and this is my journey from surgery on and how I get through each day.
Lucky Santangelo: My Life With Cushing
After my work in the office, I tried to research on the web about this Mr. Cushing (cushing's syndrome). I found out that I have almost all of the symptoms such as moonfaced, buffalo hump, hypertension, water retention, central obesity ( i weighed 94 kg); purplish straie on the abdomen and legs and unintentional weight gain...

Mary (MaryO): Cushing's & Cancer
The life and times of a pituitary Cushing's survivor (1987) AND a kidney cancer (Renal Cell Carcinoma) survivor (2006).

Addison's Help to promote Addison's Disease awareness and adrenal issues.
Cushie Blogger We are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.
We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.
Cushie Info Blog It's About Time There Was Support for Cushing's.

Mary (mertie): Mary's Mindless Musings
Thoughts on Cushing's and life
Melissa (MelissaTX): Cushing's Moxie
Fighting The Worst Disease You've Never Heard Of
Nancy (NancyJ): It's a Cushie Life
It's a Cushie Life: my journey to Cushing's Syndrome recovery

Rene (alexsmom): Miss Diagnosis
My life as a mom and as the parent of a child with Cushing's Disease
Robin (staticnrg): survive the journey
Cushing's survivor gives tips and help to others with the disease
Saberlowe (Saberlowe): Sarah Dumps Cushing's
Follow my journey as I kick this disease to the curb and move on with my life.
Sarah (smcsk8): Sarah versus Earl
My journey to diagnosis and, hopefully, a cure for Cushing's Disease

Stephanie (KaylaSivler): Being a Cushie
I always wanted to be special but having a rare disease wasn't quite what I had in mind...

Tealou: Daily Doses of WTF
For some reason I felt compelled to document this
Several Contributors, including Robin (staticnrg) whose idea it was to start this blog, Bug, CindyRPT, Jessie, Judy, Kristin, Lisa, Mal de Med, MaryO, Mertoo, PhilB and Steve : Herding Zebras
Who are we? We are "zebras".

We are people with stories to tell about chronic illness as it pertains to our lives or the lives of those we love.

There are two types of contributors to "Herding Zebras":

Those who who blog about one or more "rare" illnesses and wish to share here, too.
Those who experience and write about their "zebra" illness but do not have their own blogs.

Zebra illnesses come in many forms. Each day brings new challenges, new rewards, and new hope. This blog is about sharing those with you in hopes it will help someone.

"When you hear hoofbeats, think ~~horses, not~~ zebras"

The newest book in the Cushie Bookstore

2011-06-20T19:27:00.001-04:00

Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World

Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn’t have to be. Alone in My Universe, compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body’s systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications.

Topics include the following:

• Handling pre-diagnosis frustration

• Dealing with fears of medical treatment and surgery

• Managing family issues and work issues

• Talking with children

• Managing negative energy

• Coping with good and bad days

• Living life each day With sympathy, empathy, and mutual support, Alone in My Universe shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle.

MaryO'Note: This book is great for anyone with any orphan disease - it's not only for acromegaliacs!

Cushing's and Cancer - the Reality of it all

2011-06-16T14:17:00.001-04:00

This post is by Judy, a long-time message board member who is in the middle of Cushing's patients. Both children and her ex-husband have dealt with Cushing's. Judy is a Cushie-Blogger.

She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html

Okay, I'm probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost.......

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn't good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing's patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn't accomplish something that day.
4.Being able to find an understanding doctor that isn't halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn't feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn't have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn't usually affect every system in the body. If you get a cure from cancer you aren't usually left with permanent damage to random body systems.

Statistics say that Cushing's is rare. I know it's not. As the Cushie community says - it's just rarely diagnosed. Most people think they don't know anyone with Cushing's. Most people would be wrong. They just don't know a diagnosed Cushing's patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing's. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing's. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing's. You laugh at her but you know what? This disease doesn't discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing's truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said "Cushing's kills." It just does it at a very slow, painful pace.

MaryO'Note:

This is fantastic, Judy. Thanks for saying it!

I've often seen that stupid FB post and haven't reposted it.

I am both a Cushing's and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing's and the after-effects since the early 1980's.

All I'm left with after my cancer is a scar and some bad memories.

I think Sarah's death got lots of us thinking. We've seen so many unnecessary Cushing's deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing's and Cancer blog? It's perfect!

Interview with Robyn Y (2ndtimecushie), Recurrent Pituitary Patient, June 15, 2011 at 5:00 PM eastern

2011-06-15T12:56:00.001-04:00

Robyn was diagnosed with Cushing's Disease in 2004 and had 2/3 of her pituitary removed. This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.

She writes: "Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again. I am now going through what I did 8yrs ago. My endocrinologist doesn't think that the Cushing's is back because of my tests being borderline. He told me that he thinks I am obese and I need to have stomach surgery. I seriously cried for days and told him that I disagreed and I wasn't going to give up...I need support in following through with the tests that I need to. Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don't have the Cushing's back and I will have to live like this the rest of my life. Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.

I'm praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out."

Read Robyn's complete bio

This interview will be archived and available through Cushing's Podcasts on Posterous, BlogTalkRadio, or through iTunes Podcasts

Rest In Peace, Sarah!

2011-06-14T23:32:00.002-04:00

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing's Disease. She died on June 13, 2011 after a brief illness at the age of 28.
More information will be provided when it becomes available.

~~~

Sarah F's mom posted this: "we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah....."

~~~

Cushing's Tips

2011-06-14T19:48:00.001-04:00

Things I've learned and wanted to share

By LindaP, with a little help from other Cushing's Message Board members. This is a continuing list, if you want to share.

I have learned so much on this Cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously - my own opinions here!

My best wishes to everyone on their Cushing's journey.

Linda

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

1. Trust your instincts.

2. Trust your instincts some more.

3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.

4. Not everyone will have every one of the “typically described” symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don't develop these signs.

5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.

6. You don't need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.

7. Do not waste time, energy and financial resources on unhelpful doctors.

8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.

9. When seeing a new endocrinologist, don't be afraid to ask:

a. What is your opinion on cyclic or intermittent Cushings?
b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?

c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?

d. What is your diagnostic criteria for Cushings?

i. Lab tests

ii. Physical symptoms

iii. Imaging

e. How many patients have you diagnosed with Cushings?

f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?

g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?

10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.

11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:

a. Spreadsheet that summarizes most relevant test results
b. Current medical history/summary of symptoms

c. Imaging reports

d. Cortisol test results (serum, salivary, ufcS)

e. Other lab results (including EKGs and other relevant tests)

f. Eyes (visual field tests, letter from eye doctor, etc)

g. Clinic Notes

12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.

13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.

14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.

15. Test whenever you feel different.

16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.

17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won't apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen's brand glucometer is only $20.

18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.

19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.

20. Collect photos that illustrate how your physical appearance has changed.

21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.

22. When interviewing surgeons, the following questions may be helpful (mostly pituitary focused):

a. How will you approach the tumor?

b. What instruments are used? Endoscope? Microscope? Both?

c. What incisions are made?

d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?

e. What stitches will I have?

f. Do you use a “fat plug”?

g. Do you use a lumbar drain?

h. Will there be any nasal packing?

i. How will my head be immobilized during surgery? (Is a “halo” used?)

j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)

k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.

l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?

m. How many of these procedures have you done?

n. How long have you been performing this particular procedure?

o. What are some typical complications that occur with this procedure? How do you manage those complications?

p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidous or other long term complications with this surgery?

q. Tell me what to expect in terms of post-operative pain and how it will be managed.

r. Is an ICU stay typically necessary?

s. How long can I expect to stay in the hospital?

t. Do you give steroids intra-operatively?

u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?

v. When can I travel to return home?

w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)

x. How do I contact you if I should have any problems or concerns once discharged?

y. How will you communicate with my endocrinologist regarding the results of my surgery?

z. What is your protocol for following up with patients post-operatively?

aa. What is your rate of post-operative sinus infection?

bb. What is your rate of post-operative diabetes insipidous, both temporary and long-term?

23. These questions for your endocrinologist may be helpful once surgery is planned:

a. How will you determine my post-op cortisol replacement needs?

b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?

c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel "better"? What restrictions will I have?

d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?

e. Do you provide a prescription for emergency injectable hydrocortisone?

f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?

g. How long should I expect to be off work?

h. How will you follow up with me post-op?

i. What is the best way to reach you if I have any questions or concerns after surgery?

24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You'll also make some new friends.)

Pituitary Surgery Observations

2011-06-14T14:41:00.001-04:00

From Kate, one week post op: http://cushings.invisionzone.com/index.php?showtopic=19414

Hello, my dear friends,

It is strange to be writing to you from the other side of surgery (well, at least this time somewhat coherently, as my prior post-op posts have been, let's say, lubricated nicely by some very nice pain pills). It seems not too long ago, I was writing my introduction post back in August, then posting questions about testing, months of which are now thankfully over.

Some of you may remember my first posts, and I can't believe that it's only been 5 months ago that I was telling my story and searching for answers. Today, I post both because I learned some things through the surgical process, which I wanted to share with those of you who may be doing this after me. But I also post because this is my denouement...the post-climactic events in my Cushing. (Don't worry, though -- I'm not going to leave!)

PRE-OP SUGGESTIONS:

1. IN-PERSON PRE-SURGICAL CONSULT
Go see the surgeon in advance of surgery. If you can afford to actually go see the surgeon face-to-face ahead of time, I recommend it. This is brain surgery. Yes, it's an additional expense for travel, but if you can, make it happen. You will thank yourself, and you will walk out of that consult with a clear confirmation whether the surgeon will perform your surgery or whether there may be additional tests, labs, reports, referrals, etc. needed prior to that agreement.

Because I'd been fortunate to have this consult, by the time I reached the surgeon on Wednesday (before the Friday surgery) to drop off my films, he basically said, "We already met, and I have nothing to add to our prior conversation, but I'd be glad to answer any questions you may have at this time." The appointment lasted about 2 minutes. Seriously. I think having met the surgeon and him having already agreed to do my surgery meant that no questions were left to be answered -- by either of us -- by the time I went for the operation.

2. INSURANCE: Make sure your insurance is in order. You probably need a referral to the surgeon for "evaluation and treatment"; this referral comes from your PCP to the surgeon. Most surgeon's offices will handle the preauthorization with your insurance company for you. Mine did. Still, for my own peace of mind, I checked with my insurance company more than once to make sure that they had the preauthorization approved.

3. PAPERWORK:
A. LABS - Even if you've had a pre-surgical consult, or even if you've mailed your labs ahead of time, PLEASE do yourself a favor and go to surgery with your paperwork in perfect order. This means even if you have your films and labs already in the hands of the surgeon, ALSO bring a copy of your labs with you!

B. REFERRAL - This next one is non-negotiable: HAVE A REFERRAL FOR SURGERY BEFORE you arrive for surgery. If possible, have a copy of this written referral in your hands. You can arrange this by having your referring endocrinologist copy you on the referral letter/email. Just print it out and make it part of your folder. You cannot self-refer for surgery. You MUST have a referring endocrinologist confirm your diagnosis, the basis for the Dx, and put in writing his recommendation and referral for surgery. If you do not have this, then do not expect to pass go or collect $200. Them's just the facts.

C. PRE-SURGICAL PHYSICAL REPORT - You will have to have a pre-surgical physical. There will be bloodwork, and EKG, possibly a cardiac workup (if necessary), a chest X-ray, and whatever else your surgeon and PCP feel may be necessary to ensure your safe release for surgery. Once all of these tests are completed, it is then necessary to ensure that the report actually makes it to the surgeon's office. I learned this the hard way because I'd coincidentally had a pre-surgical physical for the cancelled IPSS, which had been scheduled as the same day I had surgery instead. Although I'd anticipated that my physical report would therefore wind up at UCLA (where the IPSS was scheduled) instead of Pittsburgh (where surgery was scheduled), and even though this did in fact happen, it only took a couple of phone calls to make sure my surgical clearance report finally made it to the surgeon's office. Two days before surgery, or more (if you have more notice than I did), just sit down for an hour or two and make phone calls to make sure everything is in order and where it needs to be.

D. SELF-CREATED SURGICAL PACKET - Once all of the above is accomplished, the most helpful thing you can do for yourself is to put together a packet to take with you to the surgeon:

Labs
Concise list of labs (listing all high numbers, dates, times categorized by test type)
Referral letter from your endocrinologist with the diagnostic basis for your referral
Films (Originals AND/OR on CD -- I brought both)
Pre-Surgical Physical report from Primary Care Doctor

I put my referral letter on top, my own synopsis list of labs under that, then the labs, then the physical report, and I had the clipped together and handed to the surgeon's staff upon my arrival. Maybe some of it was duplicitous, but that way, they had everything they could need at their fingertips.

4. PACKING: Pack well, but lightly. You won't be wearing a lot of clothes, and there are only so many nightgowns you can wear. Take two sets of clothes and two nightgowns, a robe and some slippers with outdoor-type soles, and then slog around in those slippers even after surgery when you are back in clothes and traveling. My sweetie husband bought me some UGG slippers with shearling insides and rubber soles, and I haven't taken them off since I got out of surgery -- even wore them to the doctor yesterday, the lab for draws on Tuesday, and plan to wear them until I am feeling like my feet don't need the comfort of something soft and warm again.

I think Mary printed my packing list in one of the recent newsletters, but I just wanted to confirm YOU DON'T NEED TO TAKE MUCH STUFF. I didn't feel like reading, playing cards, or even really watching TV. So unless you are going somewhere where they do a traditional rather than endoscopic approach (meaning you will be in the hospital more than overnight), skip the toys and such. Every other need you have will be met by the hospital.

5. PRESCRIPTIONS - Get your regular med AND post-surgical meds filled prior to leaving your hometown, if possible. This includes cortef AND injectable solucortef PLUS syringes. Not all pharmacies stock this stuff, so plan ahead a couple of days so they can order it if necessary.

6. BUY A PIK-STICK - This is a thing with a handle on one end and pinchers on the other, which will help you retrieve things off the floor post-op. Trust me, this is a good purchase. $15 at your local pharmacy or Walmart, etc.

7. PREPARE YOUR ENVIRONMENT FOR POST-OP - Get your house clean. Hire someone if you can't do it or don't have family to help. I've never had help, and this was the best thing I did for myself. I came home to a spotless house, which relieved a lot of stress.

Plan where you will sleep upright after surgery. A recliner or a chair with ottoman and pillows both work well. Gather bed pillows to prop under legs. Have a small table next to whereever you will sleep/spend the day. Put lip balm, a coaster for drinks, Puffs Plus with lotion tissues on it, and anything else you think you will need close at hand.

Make arrangements for who will help care for you post-op. You will need intense care for at least a week, and maybe two. Don't be shy to ask people for help, and tell them to bring food rather than flowers. I have enough soup in my freezer for a month, and I don't have to worry about cooking for my husband....nice!

8. SAY GOODBYE TO WORK FOR A WHILE - Don't do what I did and take work to the hotel with you. If you had appendicitis, they would live without you. No one is indespensible. This used to bother me; this week, I am appreciating the revelation. Tell everyone you need limited contact, few visitors if any and NO STRESS after surgery.

SURGICAL SUGGESTIONS

1. LOCATE THE ROUTE TO THE HOSPITAL IN ADVANCE - Find your way to the hospital before the day of surgery. Or, do like I did and arrange to stay in a hotel near the hospital that has a shuttle service. Then, arrange for the shuttle to pick you up half an hour before your appointed registration time. If going to Pittsburgh, I cannot recommend enough staying at Springhill Suites in Northshores, 1 mile from Allegheny Hospital. They took us everywhere we needed to go, including downtown to a pharmacy. For free.

2. MAKE A LIST OF PHONE NUMBERS TO CALL AFTER SURGERY - Take a list of phone numbers for your family members to call when you are out of surgery. You won't feel up to it yourself, but they will be delighted to let your friends and other family know how you made out. I confess my list was developed from my cell phone call log after I was already registered and waiting to go down to anesthesia....which is only to say if my mother didn't call you after my surgery, it does NOT mean you are not my dear friend -- it only means I couldn't quickly access your number from my call log in order to give it to her. I wish I'd written the list out in advance, though, because it relieved me to know people knew the outcome as I knew they were waiting to hear.

3. CHILL OUT, THE SYNTHETIC WAY (IF NECESSARY) - If you are like me -- someone who has not done a lot of surgery, and also hasn't taken a lot of tranquilizers -- I HIGHLY RECOMMEND GETTING TUNED IN by some Xanax, Valium, Ativan or the like immediately after registration. Now, of course I had to arrange for this medication prior to surgery, and I did this through my PCP who thought it was a great idea to have something for anxiety. Then, I did not take it until I had cleared it with the surgical team after admission to the hospital. If you talked to me on the morning of surgery as I waited to go down, you probably had a good laugh. I'm a real hoot on 2 mg of Ativan, as Robin may attest!

The net effect of the tranquilizer was that by the time they wheeled me down to anesthesia, I was not only ready for surgey, I was okay with it, not scared, kind of excited to be moving forward after all of the waiting, making funny small talk with the hospital staff, etc. Maybe you won't need this, but for me, drugs....mmmmmmmm, mmmmmmm, goood!

4. TEE TEE BEFORE CHANGING INTO HOSPITAL GOWN - Use the bathroom BEFORE putting on the surgical gown. I had gone before leaving the hotel, and since I hadn't eaten or drank anything, I thought I wouldn't need to go. Then I found myself in a 2 hour wait down in the anethesia area, and suddenly I had to tinkle. It was, I'm sure, a pretty sight to see me hobbling down the hallway in that surgical gown, in those ugly socks (that are not shaped like feet, by the way), all zonked out on Ativan and waving at people.

Where I had surgery, they did NOT use a catheter, by the way.

5. WARM BLANKIE WHILE WAITING FOR SURGERY = GOOD STUFF - Tell them you are cold, even if your temperature is just right. That warm blanket was so comforting. Made me feel all snuggly and nice. A pre-surgical hug, if you will.

6. PREPARE INFO FOR SURGICAL TEAM - Tell your anesthesiologist/s EVERYTHING about yourself. Mine was a complicated case because of my sleep apnea, which is (was?) severe. They had prepared to intubate me while awake, if necessary. By the time I had the Versed, I truly, truly would NOT have cared!!! I was so ready for surgery by the time they wheeled me in and gave the Versed, I would have pushed the tube down for them if necessary. But because anesthesia is a risk in and of itself, be SURE to tell them about ANY breathing problems you have, even asthma, some congestion from a lingering cold, apnea, whatever. I wound up in ICU -- briefly -- after surgery, just as a precaution.

7. VERSED: THE POINT OF NO RETURN - Watch your mouth after the Versed. It will give you loose lips!!! Who knows what gems may have come out of my mouth....the one thing I remember was trying to hook up Dr. D with Robin's daughter, Sarah Beth. I do think I also told him he was Dr. D -- for "Dreamy." This was right before he told me he was married, and then the next thing I knew, I was in recovery.

8. SURGERY WAS NOT THAT BAD!!!! Mine lasted 2 1/2 hours. I had it endoscopically by Dr. J, who I am convinced is a world-class surgeon. It went "perfectly," according to my surgeon. Although I had a wicked headache and a nosebleed every time I stood up, it really was not that bad. Kind of like a migraine plus a low-grade flu, and the pain meds hooked me right up. I was doing so well that by 8 a.m. the next day, they had released me from the hospital. I elected to stay until 12, though, to get my last dose of pain meds before adiosing the hospital.

For those who asked, my tumor was 5mm on the right side, had grown down into and around my septum, had been there for years to have grown in that fashion, was not recognized by the radiologist who initially read my MRI, was seen as curiously small on film by the 3 surgeons who did recognize it, and had a 3mm extension/second tumor on the left side of the pit. Dr. J and Dr. D assured me that they felt they got it all and that they had even milked the gland afterwards, though I don't know what that means.

My tumor stained positive for ACTH, and there was plenty for pathology. I have not received the official report, but at 6 a.m. the morning after surgery, Dr. D gave me the truly overwhelming news that I had pathology-proven Cushing's. I wept, pumped his hand up and down, called my husband at the hotel, and according to my mom, my husband met her for breakfast with tears streaming from utter relief and validation at this news.

P.S. Have been told that my gland was preserved and that I may be able to get pregnant. After all this time. Despite Dr. W, my repro endo who for seven years never tested me for Cushings and told me I had PCO.

NOTE FOR THOSE INTERESTED: Remember that Jan. 9th appt. I'd scheduled back in the fall with Dr. W, the one they were really reluctant to schedule? I got a call on Jan. 8th at 8 a.m. from the office manager for the fertility practice informing me that Dr. W retired on Jan. 1. Veddy, veddy interesting. I think my malpractice attorney will find this news to be interesting as well.

9. STAY IN THE HOSPITAL TWO NIGHTS IF YOU WANT TO! I wound up staying back at the hotel the night after surgery, but it would have been nice to have been in that hospital bed, having a nurse bringing me Sprite Zeros and soft, nuggety ice and helping me to the bathroom. However, most medical professionals will agree that it's best to get out of the hospital as soon as you really safely can -- there's a lot of sick folks and germs in that place, after all!

10. P-BURGH = EXCELLENT CHOICE - If you choose to have surgery in Pittsburgh, you will be treated like royalty at every step of the way. Top-notch facility, private room with a stunning view of the city, comfortable bed, constant attention, true compassion from staff, support for your family as they wait for news of your successful procedure.

POST-OP
1. TRAVELLING AFTER SURGERY - Zonk up on pain meds and suck it up and do it. Home is better than hotel, and you won't remember much of the trip if you are on meds and have help from family to do it right. If travelling by car, take pillows and snuggly blankets.

2. PAIN - For me, there wasn't a lot. Then again, I chose to spend the first three days cross-eyed and drooling on Percocets before realizing I didn't really need them. I am still taking one at night to sleep or if I get a headache. But we are talking normal headache now, not the hatchet kind.

3. CONGESTION - You will have some, but keep in mind some of that is surgical swelling and not congestion. I learned this at my PCP yesterday who said she could see the tissue swelling. Mucinex works wonders for getting packed mucus to drain, but then expect some coughing as it tickles the throat. Some folks have used humidifiers, hot bowls of water with salt and a towel over the head, throad lozenges, saline sprays and mists, nose pots to rinse the sinuses. I've done the hot bowl of water twice, and hot showers. It's been one week, and the congestion is pretty much over.

NO: Nose blowing, snuffing up, hocking loogeys, back-swallowing. Also, no bending, reaching down, straining to get up or have a bowel movement (or, as I discovered last night, doing the long cat-stretch while making the cat-stretch noise - OUCH!)

YES: Drinking hot tea, following list above, laying your head back and letting it drain down your throat, sucking it up and realizing it is temporary. LET OTHERS DO FOR YOU. This is not the time to be superwoman.

4. MEDICATIONS - Buy a seven day pill box, then fill it with what you need for the day.
Set up "Crisis Central" with your crisis letter from your endo to take to the ER if necessary (also give this to your PCP ASAP), your solucortef injectable WITH syringes, instruction sheet on how to give the shot, etc. Take your medications on time. Make sure they remain filled and call early to refill.

5. AVOID STRESS - No work. Very few phone calls. Limit internet for at least one week, maybe more. No arguing or debating with anyone about anything. Let others take care of you, even if you've never done this before in your life.

6. SLEEP A LOT. Your body needs it to recover.

7. SNUGGLY BLANKET = BEST FRIEND after surgery. I got a microfleece blanket from Target, and it has been across my lap during the day and draped over me at night. It feels like being enveloped in warm marshmallow cream, or Cool Whip. Very good $29.99 expenditure. Added bonus if you have a sweet lap dog to curl up with you.

8. LISTEN TO YOUR BODY - Mine, at least, has been telling me things: hunger, pain, stress, anxiety, fatigue, weakness, energy, etc. Respond accordingly: take pain meds for pain, eat healthfully and in small amounts when hungry (or else nausea will ensue), take meds on time, don't be afraid to take Xanax or the ilk when stress comes on. I am managing some of these meds with my PCP, who thinks keeping things on a very even keel is a good idea. Since this is new to me, Ms. Intensity, I'm having to ease through this medicinally. Deep breathing exercises work, too.

9. SHOWERING - helps break up congestion and is a good way to perk up if you are feeling low. Just, be careful showering if you are weak. I take my cortef, then shower 45 minutes later when I have some energy. Then settle back down and be quiet. Your body needs stillness and quiet to heal.

10. DON'T PUSH IT. For me, post-op has been pretty much a breeze. No intense pain, only moderate nausea, pretty good adjustment to cortef. I do note I am emotional and somewhat unable to process simple stressors. For instance, even going over to the in-laws for a simple meal was too much last night, one week post-op. So I am doing things like letting the answering machine answer for me, etc. Build a cocoon, then live in it for a while. After years of Cushing's, YOU DESERVE IT (ME, TOO!)

http://cushings.invisionzone.com/index.php?showtopic=19291&st=80

Kate's Top Ten List of Pituitary Surgery Observations (In No Particular Order)

Presurgical jokes referencing your brain tumor as the cause for your apparent failing memory should be used judiciously; I only got two laughs out of at least a dozen tries.
One-size-fits-all hospital gowns actually come in two ranges: Regular Folks...and Great Big Ma'ama Jamma!!!! (Even that one swallowed me, and I'm a big 'un!)
Cost of red plastic hospital bracelet on which the nurse clearly wrote, "Allergic to latex, bandaids and adhesives": $2.50. Cost of roll of adhesive tape subsequently used in mass quantities on inner elbow by same nurse after serum draw: $4.00. Bic pen used by mother of patient, after pulling off tape and noting angry rash, to write on patient's inner arm funny frowny-faces and long arrows pointing to residual rashes: Priceless.
"Your surgery will be mid-morning and should last about two hours." Translation: "Register promptly at 7:15 a.m. and then plan to wait twelve hours before seeing your family again."
When the lady in recovery keeps calling your name and telling you she needs you to wake up, this is NOT the same thing as when you were a teenager and your mom threatened to get a glass of water while you turned over to go back to sleep. They really mean that s*&% when they say they want you to wake up!!
"Hey, what'reyou in here for?" = not a great opener when striking up a conversation with guy moaning next to you in recovery.
Two words upon standing, post op: Nose bleed!
Time between requests for beverages: 30 minutes. Time between trips to the bathroom to tinkle: 60 minutes. Time between doses of pain meds: 240 minutes. I know, because I counted! (like, for the past 24 hours!)
Never again will you so carefully examine your boogers and snot for evidence of the dreaded clear fluids (indicative of CSF leak). "Hey, Mom, does this look pink or red to you?"
Transnasal transsphenoidal endoscopic pituitary microadenectomy: as close to drive-through brain surgery as you can get!

Packing Suggestions for Surgery

2011-06-14T12:18:00.001-04:00

From the message boards and and MaryO's personal experience

More about Kate

MRI Films (originals plus a CD)
updated medical records. Anyone who goes for surgery needs to have a back-up set of records with them. Some doctors like a list all of labs on a spreadsheet with dates, results, etc. on them to make it easier for them to go through. However, Most doctors want to see the actual test results. Have both forms, if possible.
nightgowns
robe, slippers
extra pillow, if needed
microfleece blanket
book or magazines Adrenal people: you may have trouble resting things like books on your stomach post-op so magazines or paperbacks are a better choice than hard cover
Sudoku / crossword puzzles
shampoo, conditioner
comb, brush
toothbrush, toothpaste, deodorant
lip balm
lotion
Puffs Plus with lotion
underwear
maxi pad/tampons
cool max sports injury gel pack
medications Note: Check with your doctor - the hospital may not allow you to take meds from outside.
Crisis letter
medic alert bracelet
an iPod/charger or some CD's and small player
pants with a loose elastic waist are good, or a long, loose dress.
cell phone and charger Note: Check with the hospital. Many do not allow the use of cellphones.
list of cell phone numbers of people to call from the hospital
change of clothes to wear home. Adrenal people: pants with a loose elastic waist are good, or a long, loose dress.
digital recorder so that you can record any instructions if need be after surgery
huge, cuddly teddy bear
mints for dry mouth
Buy a COOL GEL SPORTS INJURY PACK (Walmart or Walgreens) and wrap it around your head and back of your neck when you have a head-ache or are feeling bad. The cool settles your tummy, relieves the pain and swelling in the tissue around the head and neck that is irritated from surgery.
Take advantage of the moisture-ventilator that they give you in ICU and be sure to request or demand that they let you keep it after you get to your room. It relieved the dry pain that my nose had and made the whole thing WAY less painful than others have said it was for them. ALSO...if you buy one of those $30 cool water humidifiers from Walmart/Target for you upon your return home...you will LOVE the moisture it gives you and it will make your nose feel MUCH better, MUCH faster!
New! Autumn adds: "Can I add a couple items to the list that turned out to be LIFE-SAVERS for me? My husband went to Wal-mart and got a gel ice pack that is made to wrap around an arm or leg for sports injuries...The gel pack goes in the freezer and then in ...a sleeve that velcros. It is the perfect size to go around your head and it is sooooo helpful for headaches and swelling! LOVED IT and used it for a couple months after surgery!!!! A great $10.00 purchase!"

Optional, if used:

nightguard for teeth
cpap and oracle mask
Growth hormone and supplies
camera
deck of cards

Can You Help With a Salivary Question?

2011-06-09T10:06:00.001-04:00

Cherlyn asks:

Does anyone know how long it takes to get the saliva results back?

Respond at http://www.cushie.info/index.php?option=com_content&view=article&id=1071:chedder007-undiagnosed-bio&catid=32:bios&Itemid=68#comment-46 or post here and I'll get your answer to her.

Thanks!

Can you help?

2011-06-07T10:30:00.001-04:00

Mary,
I went to Endo. today an was told that my urine tests we're normal. He said there was no reason for me to be hurting an he cant do anything else. Oh, he also said I just need to excercise an over time everything should get better. I walk in his office in so much pain he didnt want to hear it. I have eveything except Diabetes and I have other symptoms groin pain,period for 3weeks,lumps on side of neck,dry mouth, all my joints are hurting so bad I can do so much.

I live in Phoenix,az does anyone know of a good doctor here. I have crappy insurance maybe thats why dr. didnt want to persue.

Any info. will help me an my family so much.

Thank-you,

From http://www.empowher.com/community/share/cushings-syndrome?allcomments=1#comment-87227

Drugs that might interfere with Cushing's testing.

2011-06-06T23:12:00.001-04:00

NIH Cushing's Syndrome Survey

2011-06-04T05:34:00.001-04:00

Information about this survey and your consent to participate

Patients with Cushing's syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing's syndrome. We want to learn more about the patients' experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

NIH Cushing's Clinical Trials Updated 6/4/2011

2011-06-04T04:36:00.001-04:00

Rank

Status

Study

Recruiting

Safety and Efficacy of LCI699 in Cushing's Disease Patients

Condition:	Cushing Disease
Intervention:	Drug: LCI699

Recruiting

Preoperative Bexarotene Treatment for Cushing's Disease

Condition:	Cushing's Disease
Intervention:	Drug: Bexarotene

Recruiting

Rosiglitazone in Treating Patients With Newly Diagnosed ACTH-Secreting Pituitary Tumor (Cushing Disease)

Condition:	Brain and Central Nervous System Tumors
Interventions:	Drug: rosiglitazone maleate; Other: laboratory biomarker analysis

Unknown ^†

Study of Depression, Peptides, and Steroids in Cushing's Syndrome

Condition:	Cushing's Syndrome
Intervention:

Recruiting

Examination of Brain Serotonin Receptors in Patients With Mood Disorders

Conditions:	Mood Disorder; Bipolar Disorder; Depression
Intervention:

Recruiting

An Investigation of Pituitary Tumors and Related Hypothalmic Disorders

Conditions:	Abnormalities; Craniopharyngioma; Cushing's Syndrome; Endocrine Disease; Pituitary Neoplasm
Intervention:

Recruiting

Prospective, Open-Label, Multicenter, International Study of Mifepristone for Symptomatic Treatment of Cushing's Syndrome Caused by Ectopic Adrenal Corticotrophin Hormone (ACTH) Secretion

Condition:	Cushing's Syndrome
Intervention:	Drug: Mifepristone

Recruiting

Anesthesia Management of Retroperitoneal Adrenalectomies

Condition:	Adrenal Tumors
Intervention:

Recruiting

Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex

Conditions:	Cushing's Syndrome; Hereditary Neoplastic Syndrome; Lentigo; Neoplasm; Testicular Neoplasm
Intervention:

Recruiting

New Imaging Techniques in the Evaluation of Patients With Ectopic Cushing Syndrome

Condition:	Cushing Syndrome
Intervention:

Recruiting

Adolescence, Puberty, and Emotion Regulation

Conditions:	Mood Disorder; Neurobehavioral Manifestation; Healthy
Intervention:

Recruiting

Insulin Sensitivity and Substrate Metabolism in Patients With Cushing's Syndrome

Conditions:	Cushing's Syndrome; Insulin Resistance
Intervention:	Procedure: Surgery

Recruiting

Study of Adrenal Gland Tumors

Condition:	Adrenal Gland Neoplasm
Intervention:

Not yet recruiting

Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome

Condition:	Adrenal Tumour With Mild Hypercortisolism
Intervention:	Procedure: Adrenalectomy

Recruiting

Assessing Fertility Potential in Female Cancer Survivors

Condition:	History of Cancer
Intervention:

Recruiting

Study of Pasireotide in Patients With Rare Tumors of Neuroendocrine Origin

Conditions:	Pancreatic Neoplasm; Pituitary Neoplasm; Nelson Syndrome; Ectopic ACTH Syndrome
Intervention:	Drug: Pasireotide LAR

Recruiting

Adrenal Tumors - Pathogenesis and Therapy

Conditions:	Adrenal Tumors; Adrenocortical Carcinoma; Cushing Syndrome; Conn Syndrome; Pheochromocytoma
Intervention:

Recruiting

Prevalence of Pituitary Incidentaloma in Relatives of Patients With Pituitary Adenoma

Condition:	Pituitary Tumor
Intervention:

Recruiting

Safety and Effectiveness of Granulocyte Transfusions in Resolving Infection in People With Neutropenia (The RING Study)

Conditions:	Neutropenia; Infection
Interventions:	Drug: Standard antimicrobial therapy; Biological: Granulocyte transfusions; Drug: G-CFS/dexamethasone; Device: Apheresis machine

Webinar on Pituitary Disorders: Clinical and Mental Health Challenges

2011-06-03T16:42:00.001-04:00

ime	Wednesday, June 29 · 12:00pm - 1:30pm

Location	http://www.dorlandhealth.com/webinars/pituitary_disorders/

Created By	Dorland Health

More Info	Case In Point Webinar: Pituitary Disorders Clinical and Mental Health Challenges to their Diagnosis and Treatment Wednesday, June 29, 2011 ...12:00-1:30 p.m. (EST) This webinar lays out a broad overview of common pituitary disorders, including but not limited to the clinical presentation and diagnosis of functioning and non-functioning pituitary tumors, their treatment and immediate post-operative complications. It can take many patients years to obtain a proper diagnosis. Once diagnosed and properly treated, patients are often faced with physical and mental changes that may be lifelong. Therefore, the aspects of long-term medical management and hormone replacement therapies will be discussed. The medical and mental health aspects specific to these disorders will be also be discussed with plenty of opportunity for questions and input. --------------------------------------------------- Faculty: - Linda M. Rio, M.A., MFT - Jessica Devin, M.D. ---------------------------------------------------- Continuing education credits have been applied for nurses, case managers, social workers, disability management specialists, psychologist and behavioral heath professionals. http://www.dorlandhealth.com/webinars/pituitary_disorders/

Can you halp Wayne feel not so alone with his issues?

2011-05-26T10:26:00.001-04:00

Wayne writes:

I am a long time pituitary patient and have had surgery, and radiation (twice), and currently going through chemo (10 year period). Other than the inconveience of having to go to the Dr. and endless treatments, it really has not been physically bad. Now mentally, it has been a struggle. Even though my family has been very supportive, they do not fully understand the day to day struggles I go through and I have had nobody to discuss my problems with. If you started to discuss your problems, everybody would freak out and want to know if I needed to go to the Doctor. No, I just need someone to talk to, thats all.

Respond in the comment area of Cynthia's bio or post here and I'll try to copy and paste from here.