Is itching common with Cushing’s Syndrome? Is it common to feel somewhat good for a day and then have itching, high blood pressure, nausea, flushed red face?
Please either respond here or in the comments below.
Month: May 2018
❓Guest Question: Vision Issues Post Surgery!
I have been a recovering Cushings patient for 20 years, I still get all of the vision issues that I had before surgery, it comes and goes, normally last a month or 2 then goes away for a while. Is anyone else having the same issues?
Please either respond here or in the comments below.
📞 Webinar: Oxytocin and Hypopituitarism: A Missing Forgotten Hormone?
Thursday May 31, 2018 1:00 PM – 2:00 PM EDT
Presented by
Yuval Eisenberg, MD
Assistant Professor of Medicine
University of Illinois, at Chicago (UIC)
Division of Endocrinology, Diabetes and Metabolism
Webinar Description
Learning Objectives:
1) Review the functions of oxytocin in humans
2) Describe areas of active research on oxytocin effects
3) Review the relevant oxytocin and hypopituitarism literature
Presenter Bio
Dr. Yuval Eisenberg is an endocrinologist at the University of Illinois, at Chicago (UIC). Dr. Eisenberg studied Medicine at Rush Medical College in Chicago and then did his internship, residency and fellowship at the University of Illinois at Chicago. He is certified in Internal Medicine and Endocrinology.
Dr. Yuval Eisenberg strives to connect with his patients and provide top quality medical care. He believes strongly that a good patient/doctor relationship is the backbone for successful medical practice. His goal with each visit is to listen, inquire, and educate and to assist you with making important medical decisions. Although his main focus is General Endocrinology, Dr. Eisenberg has a specialized interest in pituitary and adrenal disorders. Dr. Eisenberg’s research interest in the hormone oxytocin and how it might affect patients with pituitary hormone deficiencies (hypopituitarism).
📅 Tenth Annual Johns Hopkins Pituitary Patient Day
Join us on Saturday, October 13, 2018
10th Annual Johns Hopkins Pituitary Patient Day
Saturday, October 13, 2018, 9:00 a.m. to 3:00 p.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions
Attendance and parking are free, but seating is limited. Reserve your space now: Please R.S.V.P. by email (preferred) to PituitaryDay@jhmi.edu or by calling 410-670-7259.
Agenda
9:00 – 9:25 a.m.: Registration
9:25 – 9:30 a.m.: Welcome and acknowledgments (Roberto Salvatori, M.D.)
9:30 – 10:00 a.m.: Symptoms of Pituitary Tumors: Acromegaly, Cushing, and Non-Functioning Masses (Roberto Salvatori, M.D.)
10:00 – 10:30 a.m.: Effects of Pituitary Tumors on Vision (Amanda Henderson, M.D.)
10:30 – 11:00 a.m.: A Patient’s Story (to be announced)
11:00 – 11:30 a.m.: The Nose: the Door to Access the Pituitary Gland (Murray Ramanathan, M.D.)
11:30 a.m. – 12:00 p.m.: Surgery for Pituitary Tumors: Images from the Operating Room (Gary Gallia, M.D., Ph.D.)
12:00 – 12:30 p.m.: Radiation Therapy for Cushing, Acromegaly and Non-Functioning Tumors: When Needed, A Good Option (Kristin Redmond, M.D.)
12:30 – 1:25 p.m.: Lunch
1:30 – 3:00 p.m. Round Table Discussions:
- Acromegaly
- Cushing Disease
- Non-Functioning Adenomas
- Craniopharyngiomas and Rathke’s Cysts
❓Guest Question: PTSD and Cushings
I’m wondering if anyone post surgery is dealing with PTSD, specifically feeling like you are re-experiencing Cushings when you are having anxiety. I’m almost 3 years post surgery and have regular panic attacks where I feel like I am re-living having the disease
Please either respond here or in the comments below.
📞 Webinar: Preserving Function in Pituitary Surgery
Presented By
Daniel Prevedello, MD
Professor, Department of Neurological Surgery
Director, Minimally Invasive Cranial Surgery Program
Co-Director, Comprehensive Skull Base Center at The James
Director, Pituitary Surgery Program
The Wexner Medical Center at The Ohio State University
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: May 8, 2018
Time: 3:00 – 4:00 PM Pacific Daylight Time, 6:00 – 7:00 PM Eastern Daylight Time
Webinar Information:
Learning Objectives:
- Understand the importance of gland function preservation during pituitary surgery.
- Understand the importance of preserving nose function related to the approach.
- Understand the importance of team work in pituitary surgery
Presenter Bio
Dr. Prevedello is a professor in the Department of Neurological Surgery, and the director for the Minimally Invasive Cranial Surgery Program. He is one of only a few neurosurgeons in the world who have performed more than 1,000 Endoscopic Endonasal Approach (EEA) cases. EEA is a minimally invasive surgery technique that gives surgeons access to the base of the skull, intracranial cavity and top of the spine by operating through the nose and paranasal sinuses. Dr. Prevedello was rated in the top 10 percent of physicians in the nation for patient satisfaction in 2016 and 2017.
Dr. Prevedello’s current research focus is on developing minimally invasive approaches to the brain and skull base that will result in the best surgical tumor resection possible with the least amount of disruption to normal tissue. Finding a patient treatment option that reduces the amount of long-term consequences for patients and their families is always his top priority.
Dr. Prevedello’s medical journey began in Brazil, where he attended medical school and finished his residency in 2005. He completed fellowships in neuroendocrine and pituitary surgery at the University of Virginia, and another in skull base and cerebrovascular surgery at the University of Pittsburgh.
😍 Mary Kelly O’Connor, Person of the Month-May 2018
The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer! Mary Kelly O’Connor is Person of the Month for May, 2018!
Mary Kelly O’Connor is the founder of Cushing’s Help and has been providing support to the Cushing’s community for almost 20 years! Mary’s life changed in 1983! She began noticing several weird symptoms. The first symptom she noticed was an abrupt cessation of her menstrual period. Her gynecologist confirmed that she was not pregnant but had no good explanation for why this was happening. Then she began experiencing extreme fatigue which required her to take frequent naps throughout the day.
Many weird and seemingly random symptoms began appearing. Mary grew a beard (Hirsutism), gained weight even though she was on Weight Watchers and working out at the gym nearly every day, developed chronic pain, developed what is called a “moon face” and a “buffalo hump” on the back of her neck, and developed stretch marks. Mary also developed mood symptoms including depression.
Mary eventually came across a little article in the Ladies Home Journal magazine that said “If you have these symptoms…ask your doctor about Cushing’s”. After that, Mary began assertively seeking answers. However, doctors would say that Cushing’s Disease is too rare and that there was no possible way that she had it!
In 1986, Mary developed a symptom that really caught her husband’s attention-she began bruising very easily and bleeding under her skin. Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked into a possibility of Cushing’s. Mary was referred to an endocrinologist who ran further tests.
The endocrinologist confirmed Cushing’s but ultimately Mary O was referred to NIH (National Institutes of Health). NIH was doing a clinical trial of Cushing’s. While she was at NIH, Mary O was gaining about a pound a day! Adrenal Cushing’s was ruled out so they knew that the tumor, which was the culprit, was in the pituitary.
The MRI was not able to locate the tumor which is typical with Cushing’s pituitary tumors. The next step was an Inferior Petrosal Sinus Sampling Test, IPSS. Ultimately, this test did show where her tumor was located.
On November 3, 1987, the surgeon, Dr. Ed Oldfield, performed the brain surgery to treat Mary O’s Cushing’s Disease. Mary O achieved remission from Cushing’s and she gets tested regularly to confirm that she has sustained remission.
Because of Mary O’s experience of being sick and the difficulty in finding help and a diagnosis, she decided to create a safe space to support others and to increase awareness. The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then expanded. Today, in 2017, they have thousands of members!
Mary O is the pioneer for bringing people together in this format from all over the world! This is incredible considering that this was not even a concept when she was going through her journey in the 80s! This has become a movement of empowerment, as people are participating in their own diagnosis, testing, and treatment! Also, it was very difficult for patients to connect with one another many years ago. However, now, thanks to Mary O, patients are able to reach each other and not feel so alone!
Mary O has a blog radio show where she has conducted interviews with influential people in the community including doctors, mental health experts, and other professionals. She has also been able to interview many patients who heal by sharing their stories with each other.
Mary O wants to support, educate, and share! She has been able to provide support to an entire community of people on her own and with very little funding. She puts her heart and soul into this work because she cares deeply about this community! Mary O has been able to turn her adversity into an opportunity to walk in her purpose to change lives!
Mary Kelly O’Connor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly O’Connor the founder of Cushing’s Help, a foundation dedicated to giving Cushing’s patients valuable information, a space to share their stories, and a place to connect with one another. To learn more information about Mary O and her work, you can go to her website at http://cushings-help.com/ Together, We are EPIC!
From http://www.epictogether.org/mary-oconnor/
