Cataloging Cushing’s Patients

The Cushing/Whitney Medical Library is pleased to announce the completion of a grant funded to catalog 2,600 glass plate negatives from the Cushing Brain Tumor Registry.  The grant proposal, “Rethinking Early Neurosurgery: The Harvey Cushing Collection,” was funded through a National Network of Libraries of Medicine-New England Region Knowledge/Data Management Award.  From mid-February through April 30th 2017,  a team of graduate and undergraduate students carefully inputted information on over 3,000 glass plate negatives into the Cushing Center database, exceeding the estimated amount in the grant. The negatives depict Dr. Harvey Cushing’s patients, including histology.

Harvey Cushing, the pioneer and father of neurosurgery, was born on April 8, 1869 in Cleveland, Ohio. He graduated from Yale University in 1891, studied medicine at Harvard Medical School and received his medical degree in 1895. In 1896, he moved to Johns Hopkins Hospital where he trained to become a surgeon under the watchful eye of William S. Halstead, the father of American surgery. By 1899 Cushing became interested in surgery of the nervous system and began his career in neurosurgery. During his tenure at Johns Hopkins, there were countless discoveries in the field of neuroscience.

In 1913, Cushing relocated to Harvard as the surgeon-in-chief at the new Peter Bent Brigham Hospital. Cushing continued to operate on several hundred patients a year with remarkable results.  In addition he was relentless in his recording of patient histories and continued his careful attention to the details and documentation of each surgery.

In 1932 Harvey Cushing retired and in 1933 he agreed to join the staff at Yale University, his alma mater, as the Sterling Professor of Medicine in Neurology.  Cushing died in 1939.

The negatives are undergoing rehousing and digitization, and will be made available for research through the Cushing Center database, which brings multiple parts of Harvey Cushing’s work together in one place.  The database, still in development, will allow researchers to explore Cushing’s medical work and patients.  Please contact Terry Dagradi, Cushing Center Coordinator, for details.

 

From http://library.medicine.yale.edu/blog/cushing-center/cataloging-cushings-patients

Who’s at Risk for Cushing’s?

by Kristen Monaco
Contributing Writer, MedPage Today

Researchers have developed a new method to assess specific populations for Cushing’s syndrome, based on results from a multicenter study.

The prospective cohort study evaluated at-risk patients for Cushing’s syndrome to create a novel type of scoring system in order to better predict the development of disease, stated lead author Antonio León-Justel, PhD,of the Seville Institute of Biomedicine in Spain, and colleagues.

Cushing’s syndrome is identified by an excess of cortisol and/or glucocorticoids in the blood, which can result in myriad negative health outcomes, including an increased risk of death and morbidity, according to the study in The Journal of Clinical Endocrinology & Metabolism.

Because Cushing’s syndrome (CS) is complex and difficult to diagnose, there is a necessity for new methods to assess at-risk populations in order to mitigate the rising prevalence of the disorder, the authors noted.

“The diagnosis of CS might pose a considerable challenge even for experienced endocrinologists since there are no pathognomonic symptoms or signs of CS and most of the symptoms and signs of CS are common in the general population including obesity, hypertension, bone loss, and diabetes,” the senior author, Alfonso Leal Cerro, MD, toldMedPage Today via email. “Routine screening for CS remains impractical due to the estimated low prevalence of the disease. However this prevalence might be higher in at-risk populations.”

The authors screened a total of 353 at-risk patients from 13 different hospitals across Spain between January 2012 and July 2013 to measure cortisol variability from saliva samples.

At-risk populations, which the authors note have a higher prevalence of Cushing’s syndrome, included individuals with type 2 diabetes, hypertension, and osteoporosis.

The patients screened in the study were each identified as having at least two of the risk factors for Cushing’s syndrome: high blood pressure (defined as taking two or more drugs and having a systolic blood pressure over 140 mmHg and/or a diastolic blood pressure over 90 mmHg), obesity (body mass index >30), uncontrolled diabetes (HbA1c>7.0%), osteoporosis (T-score ≥ -2.5 SD), and virilization syndrome (hirsutism) with menstrual disorders.

The researchers used clinical and biochemical methods of assessment. Clinical methods included inspection of physical characteristics, such as muscle atrophy, purple striae, and/or facial plethora. Biochemical methods included collecting saliva and blood samples from participants to test cortisol levels using a chemiluminescence method. Each individual was identified as either negative for hypercortisolism (late-night salivary cortisol [LNSC] ≤ 7.5 nmol/L and dexamethasone suppression test [DST] ≤ 50 nmol/L) or positive for hypercortisolism (LNSC > 7.5 nmol/L and DST > 50 nmol/L).

Univariate testing indicated the following significant characteristics to be positively correlated with the development of Cushing’s syndrome:

  • Muscular atrophy (15.2, CI 95% 4.48-51.25);
  • Osteoporosis (4.60, 1.66-12.75); and
  • Dorsocervical fat pad (3.32, 1.48-7.5).

A logistic regression analysis of LNSC values also showed significant correlation between Cushing’s syndrome and the following top three characteristics:

  • Muscular atrophy (9.04, CI 95% 2.36-34.65);
  • Osteoporosis (3.62, CI 95% 1.16-11.35); and
  • Dorsocervical fat pad (3.3, CI 95% 1.52-7.17).

Roberto Salvatori, MD, professor and medical director of the Johns Hopkins Pituitary Center, who was not involved with the study, commented to MedPage Today in an email: “Any endocrinologist would proceed with careful Cushing biochemical evaluation in the presence of the clinical features (muscular atrophy, osteoporosis, and dorsocervical fat pad) that are well known to be associated with hypercortisolism. Of notice, the odds ratio is further increased by an abnormal late-night salivary cortisol, which is already a screening test for hypercortisolism.”

The researchers used their results to develop an equation to determine the level of risk a patient has for developing Cushing’s syndrome, taking into account factors for osteoporosis, dorsocervical fat pads, muscular atrophy, and LNSC levels.

Although the study was able to develop a comprehensive risk model for the syndrome, when tested against the prevalence for Cushing’s syndrome in the subject group, the equation generated a total of 56 false-positive and 25 true-positive results. Overall, the researchers wrote, 83% of patients were accurately classified as belonging to the at-risk population when using the equation.

Because the newly developed equation for identifying at-risk individuals involved factors that are relatively easy to test for, the authors noted that clinical application is broad and cost-effective in a primary care setting.

“We would like to test the scoring system in different clinical settings such as primary care or hypertension clinics,” Leal Cerro said. “Primary care would be a particularly interesting setting since it might significantly decrease the time to diagnosis, something critical to avoid an excessive exposure to glucocorticoid excess and consequent deleterious effects.”

Salvatori said that while the study was a good start at shedding light on some of the unknowns about Cushing’s syndrome, more research is required. “The real question in my mind is when does a non-endocrinologist need to suspect Cushing in a general medicine, orthopedic, or other clinic? When the internal medicine residents ask me about guidelines for ‘who to screen for hypercortisolism in my clinic,’ I am unable to provide an evidence-based answer.”

The study was funded by a grant from Novartis Oncology, Spain.

León-Justel and Leal Cerro disclosed financial relationships with Novartis Oncology, Spain.

  • Reviewed by F. Perry Wilson, MD, MSCEAssistant Professor, Section of Nephrology, Yale School of Medicine and Dorothy Caputo, MA, BSN, RN, Nurse Planner

LAST UPDATED 08.15.2016

8th Annual Johns Hopkins Pituitary Patient Day

Johns Hopkins Pituitary Patient Day

Join us on Saturday, September 17, 2016

8th Annual Johns Hopkins Pituitary Patient Day
Saturday, September 17, 2016, 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

This is a free event, but seating is limited. Reserve your space now: Please R.S.V.P. by September 9, 2016 by email (preferred) to PituitaryDay@jhmi.edu  or by calling Alison Dimick at 410-955-3921.

Agenda

9:30 – 9:55 a.m.: Registration

9:55 – 10:00 a.m.: Welcome and Acknowledgements

10:00 – 10:25 a.m.: Different Kinds of Tumors in the Pituitary Area: Non-Functioning, Acromegaly, Cushing, etc. (Roberto Salvatori, M.D.)

10:25 – 10:50 a.m.: The Pituitary Gland, Cortisol and Stress (Gary Wand, M.D.)

10:50 – 11:10 a.m.: A Patient’s Story

11:10 – 11:30 a.m.: The Eye and the Pituitary Gland: Why It’s Important to SEE the Right Doctor (Pun Intended) (Dan Gold, D.O.)

11:30 – 11:50 a.m.: Surgery for Pituitary Tumors: (Not So Scary) Pictures from the Operating Room Treating Acromegaly, Cushing and Non-Functioning Tumors (Gary Gallia, M.D., Ph.D.)

11:50 a.m. – 12:10 p.m.: Coordinating the Care of Pituitary Patients: It Takes a Village (Pituitary Nurse)

12:10 – 12:30 p.m.: Radiation Therapy for Cushing, Acromegaly and Non-Functioning Tumors: A Good Option when Needed (Lawrence Kleinberg, M.D.)

12:30 – 1:25 p.m.: Lunch

1:30 – 3:00 p.m. Round Table Discussions:

  • Medical: Making Sense of So Many Medications
  • Surgical: Meet Surgeons and Patients Who Have Had Pituitary Surgery
  • Radiation: Share Your eX-peRience!

Day 13, Cushing’s Awareness Challenge 2016

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was  just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a ginuea pig again?

The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?

Stay tuned for April 15, 2016 when all will be revealed.

Read

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

Johns Hopkins surgeon ‘Dr. Q’ to get Hollywood treatment

DrQ

 

Brad Pitt’s production company Plan B has teamed up with Disney to develop a movie based on the life of Alfredo Quiñones-Hinojosa, the head of brain tumor surgery at Johns Hopkins Hospital.

Quiñones-Hinojosa’s path to becoming a physician started in an unlikely place: a cotton field. He had come to the United States in 1987 from his native Mexico at the age of 19, penniless and unable to speak English. Driven to have a better life than the one he would have had in Mexico, he took jobs picking cotton, painting, and welding to pay for his tuition at San Joaquin Delta Community College in Stockton, California.

“These very same hands that now do brain surgery, right around that time they had scars everywhere from pulling weeds. They were bloody,” he told CNN correspondent Sanjay Gupta in a 2012 interview.

After earning his medical degree from Harvard Medical School and training in both general surgery and neurosurgery at the University of California, San Francisco, Quiñones-Hinojosa came to Johns Hopkins in 2005 and became a faculty member and surgeon. He specializes in brain cancer and pituitary tumors. His autobiography Becoming Dr. Q: My Journey from Migrant Farm Worker to Brain Surgeon was published in 2011 and received the International Latino Book Award in 2012.

Feeling like an outsider helped keep Quiñones-Hinojosa focused and “at the top of his game,” he told CNN. In the keynote speech delivered at Johns Hopkins University’s 2013 commencement ceremony, he elaborates, weaving together memories of his own brush with death in a work accident with his experience operating on a patient with a massive brain tumor that unexpectedly ruptured during surgery. Quoting the migrant farm worker and civil rights activist Cesar Chavez, he says, “If you are afraid, you will work like crazy.”

Plan B began developing the project—titled Dr. Q, the nickname for Quiñones-Hinojosa adopted by his patients—in 2007 after hearing a radio broadcast about the doctor and his background.

Matt Lopez, author of the popular Civil War play The Whipping Man and a former staff writer for HBO’s The Newsroom, will write the script.

According to The Hollywood Reporter, Disney expects Dr. Q to be a modestly-budgeted inspirational drama. Plan B executives Pitt, Dede Gardner, and Jeremy Kleiner won Best Picture Oscars two years ago for their production work on 12 Years a Slave and were nominated this year for their work on The Big Short.

From http://hub.jhu.edu/2016/03/07/brad-pitt-disney-dr-q-movie

 

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