Webinar: Growth Hormone Replacement: Not Just for Kids?

Thu, Mar 23, 2017 12:00 PM – 1:00 PM EDT

Presented by:

Susan L Samson MD PhD FRCPC FACE
Associate Professor, Department of Medicine
Medical Director, Pituitary Center at Baylor St. Luke’s Medical Center

Learning Objectives: At the end of the session the learner will be able to:

1) Discuss the testing approaches for confirmation of growth hormone deficiency in adult patients with pituitary disease
2) Understand the far reaching effects of growth hormone throughout the body
3) Describe the potential benefits and adverse effects of growth hormone replacement therapy in appropriate patients

Presenter Bio:

Susan L. Samson MD PhD FRCPC FACE is an Associate Professor of Medicine and Neurosurgery at Baylor College of Medicine in Houston, Texas. She is originally from Canada and completed her medical degree at Queen’s University (Kingston, Ontario) and Internal Medicine training in her hometown of Calgary, Alberta. She moved to Baylor for Endocrinology fellowship training and then joined the faculty. She is the Medical Director of the Pituitary Center at Baylor St. Luke’s Medical Center where she is part of a multidisciplinary team – with Dr. Daniel Yoshor (Neurosurgery) and Dr. Mas Takashima (Otolaryngology)- who are committed to excellence in surgical and clinical outcomes for pituitary patients. She currently serves on the board of directors of the American Association of Clinical Endocrinologists and is a member of the Neuroendocrine and Pituitary Scientific committee. She also is involved in training future endocrinologists as the Endocrinology fellowship program director. Dr. Samson has a basic science lab and has also been involved as a site principal investigator for pharmaceutical clinical trials of therapies for pituitary disorders. She has been awarded the Fulbright and Jaworski L.L.P. Faculty Excellence Award for Teaching and Evaluation as well as the Rising Star award at Baylor College of Medicine. Her major clinical interest is pituitary disorders including pituitary adenomas, hypopituitarism, Cushing’s disease and Acromegaly.

Register at https://attendee.gotowebinar.com/register/6691253214341976066?utm_source=newsletter_232&utm_medium=email&utm_campaign=webinar-announcement-growth-hormone-replacement-not-just-for-kids

Time to Sign Up for the Cushing’s Awareness Challenge 2017

I plan to do the Cushing’s Awareness Challenge again. Last year’s info is here: http://cushie-blogger.blogspot.com/2016/03/fifth-annual-cushings-awareness.html

That page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc

The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Sixth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?
maryo colorful zebra

Advances in the Treatment of Pediatric Brain Tumors Webinar

Sign up to join Johns Hopkins’ director of pediatric neurosurgery Alan Cohen on Tuesday, March 7, from 7 to 8 p.m. ET for a free online seminar to learn more about the latest surgical treatment options for pediatric brain tumors, including minimally invasive techniques.

REGISTER:

US Residents

International Residents

Webinar: Advances in Pituitary Surgery

Presented by

Paul Gardner, MD
Associate Professor, Neurological Surgery
Director, Center for Skull Base Surgery
University of Pittsburgh Medical Center (UPMC)

Register Now

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: February 16, 2017
Time: 1:00 PM Pacific Standard Time, 4:00 PM Eastern Standard Time

Webinar Objectives:

1. Understand the advantages of the endoscopic approach to the pituitary
2. Recognize limitations of modern pituitary surgery
3. Understand techniques for avoiding complications

Presenter Bio:

Paul A. Gardner, MD, Associate Professor, Department of Neurological Surgery, University of Pittsburgh School of Medicine and Neurosurgical Director, Center for Cranial Base Surgery, University of Pittsburgh Medical Center.

Dr. Gardner joined the faculty of the Department of Neurological Surgery at the University of Pittsburgh School of Medicine in 2008 after completing his residency and fellowship training at the University of Pittsburgh. He completed his undergraduate studies at Florida State University, majoring in biochemistry, and received his Medical Degree from the University of Pittsburgh School of Medicine.

Dr. Gardner completed a two-year fellowship in endoscopic endonasal pituitary and endoscopic and open skull base surgery at the University of Pittsburgh Medical Center. His research has focused on evaluating patient outcomes following these surgeries and more recently on molecular phenotyping of rare tumors. He is recognized internationally as a leader in the field of endoscopic endonasal surgery, a minimally invasive surgical approach to the skull base. His other surgical interests include pituitary tumors, open cranial base surgery, and vascular surgery.

Dr. Gardner is certified by the American Board of Neurological Surgery and is a member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, and the North American Skull Base Society where he currently serves as a member of the Scientific Program Committee and the Membership Committee. Dr. Gardner is co-editor of the textbook Skull Base Surgery, part of the Master Techniques in Otolaryngology – Head and Neck Surgery series published by Wolters Kluwer, and has authored 190 peer-reviewed publications and 71 book chapters.

What Idiots!

Every morning, I go onto the message boards and ban the spammers who seem to operate only at night.  This one was particularly amusing since he posted the same basic messages about 3 hours apart.

In that 3 hours, he managed to change his IP address (upper right corner), his birthplace and his school plus a few other minor details.

Unfortunately, both posts were in response to the same topic so they appeared right after one another LOL

screenshot-2016-11-22-08-00-53

 

Interview with Doc Karen, Pituitary Patient and Cushing’s Advocate

Karen’s Story

Life was good! In fact, life was great! I was married to the love of my life. We had a beautiful little girl. My husband and I had both earned our graduate degrees. I earned my Doctorate in Clinical Psychology and was growing my clinical practice. I loved my work!

In October, 2006, my life was turned upside down when I gained 30 pounds in 30 days! I knew this was not normal at all. I sought answers but my doctor kept insisting that I wasn’t eating the right foods, that I wasn’t exercising hard enough, and finally that it was genetic. However, I was always a thin person, I ate pretty healthy foods, and I was pretty active. Red flags became even greater when my physician put me on prescription weight loss drugs and I STILL gained another 30 pounds. I knew my body and I knew something was wrong but I had no one to validate what was going on.

In January, 2010, to my surprise, I learned that I was miraculously pregnant with our second daughter. I was so sick during that pregnancy and,  again, my doctors couldn’t figure out why. My OBGYN was very supportive, yet so concerned. Her solution was to put me on bed rest. I became so ill that she told me that “my only job was to sit still and wait to have a baby”. I did give birth to a healthy baby girl four weeks early. Little did I know, then, how much of a miracle she was.

During the latter part of my pregnancy, while flipping through channels on television, I came across a Cushing’s episode on the health TV show, “Mystery Diagnosis”.

I knew right away that this diagnosis fit everything I had been experiencing: years of weird and unexplained symptoms, gaining 150 pounds for no reason, an onset of diabetes, high blood pressure, and an overall sense of doom.

You see, my friends and family witnessed me go from a vibrant young Clinical Psychologist in practice, to someone whose health deteriorated due to the symptoms of Cushing’s, as I tried for many years to get answers from professionals. As I continued to eat a healthy, 1000 calorie per day diet, engage in exercise with multiple personal trainers, and follow through with referrals to consult with dietitians; I continued to gain weight at a rate of 5 pounds per week and experience rapidly declining health. Finally, after watching that Cushing’s episode of Mystery Diagnosis, I found my answer! Ultimately, I sought the expertise of and treatment from a team of experts at the Seattle Pituitary Center in Seattle, WA. I had brain surgery in Seattle on November 16th, 2011. I want to tell you how I found the people who helped save my life…

On June 9, 2011, I went to my first MAGIC conference. I had never heard of them but someone on one of the online support groups told me about it.  At that time, I was working but was very, very sick. We suspected at that time that I had been sick for years! My local endocrinologist was far from a Cushing’s expert. After watching the Cushing’s episode of Mystery Diagnosis, I told the same endocrinologist who had misdiagnosed me for years that I had found my answer. He swore that there was “literally no possible way that I had Cushing’s Disease!” He stated that my “hump wasn’t big enough”, “my stretch marks were not purple enough” and that “Cushing’s patients do not have children!” I told him that I was NOT leaving his office until he started testing me. He finally caved in. To his surprise, I was getting abnormal labs back.

At that time, there was evidence of a pit tumor but it wasn’t showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushing’s based pituitary tumors are so small that they do not show up on an MRI. Non Cushing’s experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.

So, back to the MAGIC convention; my husband and I went to this conference looking for answers. We were so confused and scared!  Everyone, and I mean everyone, welcomed us with opened arms like we were family! There were brilliant presenters there, including an endocrinologist named Dr. William Ludlam. At that time, he was the director at the Seattle Pituitary Center in Seattle, WA. He is a true Cushing’s expert. Since then, he left in January, 2012 to have a significant impact toward the contribution of research of those impacted by Cushing’s Syndrome. His position was taken over by another brilliant endocrinologist, Dr. Frances Broyles.

I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We don’t know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; it’s like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, “We gave you a sandwich!” Even if they were to give you a dozen sandwiches; if it wasn’t turkey, it wouldn’t be the right one. This is how I feel about these tests that they ran and said were all “normal”. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!

You see, Dr. Ludlam had given me his business card at the conference, which took place two weeks prior to the IPSS. I put it away for a while. But, something kept telling me to pull the card out and contact him. I am crying just thinking about it, Lord!

So, prior to my IPSS, I wrote Dr. Ludlam an e mail asking him some questions. At that time, he told me to send him ALL of my records including labs. I sent him 80 pages of records that day.  He called me back stating that he concurred with all of the evidence that I definitely have Cushing’s Disease from a pituitary source. He asked me what I planned to do and I told him that I was having the IPSS procedure done in a few days at the University of Chicago. He told me once I got my results to contact him.

Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!

Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get this…The DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!

Two days later, Craig and I were on a plane to Seattle. I had never in my life been to Seattle, nor did I ever think I would go. We saw the man that God used to save my life, Dr. William Ludlam, the same man who we had met at the MAGIC conference for the first time one month prior! He put me on a combo of medications that would pull me out of crisis. Within one month, my blackouts had almost completely stopped! Unfortunately, we knew this was a temporary fix! He was treating me to carry me over to surgery. You see, his neurosurgeon, Dr. Marc Mayberg was just as amazing. He is one of the top neurosurgeons in the US! Statistically, he has one of the highest success rates!

The problem was that our insurance refused to pay for surgery with an expert outside of IL, stating that I could have surgery anywhere in IL! Most people don’t know that pituitary surgeries are very complicated and need the expertise of a “high volume center” which is where they do at least 50 of these surgeries per year. Dr. Mayberg has performed over 5,000 of these surgeries!  By this time, we had learned that we need to fight for the best care! It was what would give me the best chance at life! We thought I would have to wait until January when our insurance would change, to see if I could get the surgery I so desperately needed! I was holding on by a thread!

We began appealing our insurance. At the time the MAGIC foundation had an insurance specialist who was allowed to help us fight our insurance. Her name is Melissa Callahan and she took it upon herself to fight for us as our patient advocate. It was a long and hard battle! But…we finally WON!!!! On November 16th, 2011, Dr. Marc Mayberg found that hidden tumor on the left side of my pituitary gland! He removed the tumor along with 50% of my pituitary gland.

Recovery was a difficult process. They say that it takes about one full year to recover after pituitary surgery for Cushing’s. I was grateful to be in remission, nonetheless. However, about one year after my brain surgery, the Cushing’s symptoms returned. After seven more months of testing that confirmed a recurrence of the Cushing’s, I was cleared for a more aggressive surgery. This time, I had both of my adrenal glands removed as a last resort. By then, we had learned that I had hyperplasia, which is an explosion of tumor cells in my pituitary. It only takes one active cell to cause Cushing’s. Therefore, I could have potentially had several more brain surgeries and the disease would have kept coming back over and over.

As a last resort, my adrenal glands were removed so that no matter how much these cells try to cause my adrenals to produce excessive amounts of cortisol; the glands are not there to receive the message. As a result, I am Adrenally Insufficient for life, which means that my body cannot produce the life sustaining hormone, cortisol, at all. I had my Bilateral Adrenalectomy by world renowned BLA surgeon, Dr. Manfred Chiang, in Wisconsin on August 21st, 2013. I traded Cushing’s Disease for Addison’s Disease, one of the hardest decisions I have ever had to make in my life. However, I knew that I would die with Cushing’s. Recovery from my last surgery was difficult and involved weaning down to a maintenance dose of steroid to replace my cortisol. Now, on a maintenance dose; I still have to take extra cortisol during times of physical or emotional stress to prevent my body from going into shock.

I promised a long time ago that I would pay it forward…give back because so much has been given to me. This is why I have committed my life to supporting the Cushing’s community. I post videos on YouTube as a way of increasing awareness. My channel can be found at http://www.YouTube.com/drnkarenthames

Additionally, I am working on a Cushing’s documentary. Please like us on Facebook at http://www.facebook.com/Hug.A.Cushie

Thank you for taking the time to read my story!

Karen has made 2 videos about her experiences with Cushing’s:

and

Doc Karen will be our guest in an interview on BlogTalk Radio  Friday December 2 at 11:00 AM eastern.  The Call-In number for questions or comments is (323) 642-1665 .

The archived interview will be available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 90 other past interviews to listen to!

Pituitary Patient Support Group Meeting

patient-support-meeting

 

Pituitary Patient Support Group Meeting!
Saturday–November 19th, 2016
“We will be Live Streaming on Facebook!!!”

Speaker: Garni Barkhoudarian, MD
Topic: “Advancements in Pituitary Surgery-Better Treatments, Better Quality of Life”
Meeting: 10:00am-11:00am
Breakfast Snack will be served 10:00am-11:00am
Lunch will be served 11:30am following the meeting
Family and Friends Welcome!
Please RSVP: Sharmyn McGraw at pituitarybuddy@hotmail.com or message on FB