Pituitary Network Association

Pituitary Network Association The PNA is an international non-profit organization for patients with pituitary tumors and disorders,
(16)

Don't miss the webinar presented by Dr Nelson Oyesiku on Implications of Covid -19 on Pituitary Patients
05/08/2020

Don't miss the webinar presented by Dr Nelson Oyesiku on Implications of Covid -19 on Pituitary Patients

**Covid-19 and Adrenal Insufficiency - Patient Advisory**The PNA has been monitoring the unprecedented events taking pla...
03/25/2020
Advisory for Adrenal Insufficiency Patients during Covid-19 Outbreak | Latest News and Articles | News

**Covid-19 and Adrenal Insufficiency - Patient Advisory**
The PNA has been monitoring the unprecedented events taking place around the world.
During these uncertain times, we want to share as much information with our patient community as possible. Click on the link to read: https://bit.ly/39hPUCf -19

The Pituitary Network Association is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.

Updated Webinar Announcement:Join us for a free webinar! We have an added bonus to this webinar:Friday, March 6, 202012:...
03/03/2020
Patient Approach and Resection of the Medial Wall of the Cavernous Sinus: Game-changing Technique for Patients with Acromegaly

Updated Webinar Announcement:

Join us for a free webinar! We have an added bonus to this webinar:

Friday, March 6, 2020

12:00pm - 1:00pm pst
3:00pm - 4:00pm est

Presented by
Juan C. Fernandez-Miranda, MD, FACS
Professor of Neurosurgery and Medicine
Surgical Director of Brain Tumor, Skull Base, and Pituitary Centers
Director, Neurosurgical Training and Innovation Center - NeuroTrain Center
Stanford University Medical Center

**Newly Added **
With Introduction: The Approach to a Patient With Acromegaly

presented by
Laurence Katznelson, MD
Associate Dean of Graduate Medical Education
Professor of Neurosurgery and Medicine (Endocrinology and Metabolism)
Medical Director, Pituitary Center
Stanford School of Medicine

After registering you will receive a confirmation email containing information about joining the Webinar.

If you have any questions please feel free to contact us at [email protected]

Date: Friday, March 6, 2020
Time: 12:00 PM Pacific Standard Time 3:00 PM Eastern Standard Time
Introduction Objectives:

1. Identify the tests used to diagnose acromegaly.
2. Describe the step wise approach for therapy of a patient with acromegaly

Objectives:

1. Review previously reposted rates of cavernous sinus invasion and remission rates after surgery for Growth-Hormone secreting adenomas
2. Describe our innovative surgical technique for selective resection of the medial wall of the cavernous sinus
3. Present our current results applying this technique for acromegalic patients treated at Stanford University

Presenter Bios:
Laurence Katznelson, MD received his medical degree from the University of California, Los Angeles and performed his internship and residency in Internal Medicine at the Hospital of the University of Pennsylvania, Philadelphia. He then performed a fellowship in Endocrinology and Metabolism at the Massachusetts General Hospital, Boston, and then stayed on as faculty in the Neuroendocrine Unit. Dr. Katznelson is a Professor of Neurosurgery and Medicine at the Stanford University School of Medicine. At Stanford, he is the Associate Dean of Graduate Medical Education. He is also the medical director of Stanford's Pituitary Center. Dr. Katznelson previously served as the endocrinology fellowship Program Director at Stanford. Dr. Katznelson received the H. Jack Baskin Endocrine Teaching Award, American Association of Clinical Endocrinologists in 2015. He received the Laureate Outstanding Educator Award, Endocrine Society in 2017. He has a long standing research interest in pituitary disease, including hypopituitarism and the pathophysiology and therapy of pituitary tumors.

Dr. Juan Fernandez-Miranda is a Professor of Neurosurgery and Surgical Director of the Stanford Brain Tumor, Skull Base, and Pituitary Center. He is internationally renowned for his expertise in minimally invasive brain surgery, endoscopic skull base and pituitary surgery, open skull base surgery, and complex brain tumor surgery. He has performed over a thousand endoscopic endonasal operations for pituitary tumors and other skull base lesions. He is highly regarded for his innovative contributions to the development and refinement of endoscopic endonasal skull base surgery, resulting in improved resection rates and outcomes in patients with pituitary adenomas invading the cavernous sinus, craniopharyngiomas, chordomas, chondrosarcomas, and skull base meningiomas.

Dr. Fernandez-Miranda completed his neurosurgery residency at La Paz University Hospital in Madrid, Spain. Upon completion of his residency, he was awarded the Sanitas Prize to the best medical postgraduate trainee in the country. From 2005 to 2007, he underwent fellowship training in microsurgical neuroanatomy at the University of Florida under legendary neurosurgeon Albert L. Rhoton, Jr. From 2007 to 2010 he continued subspecialty clinical training in cerebrovascular surgery at the University of Virginia, and endoscopic endonasal and open skull base surgery at the University of Pittsburgh Medical Center (UPMC). During his 10-year tenure at UPMC, he pioneered endoscopic endonasal approaches to highly complex pituitary and skull base tumors, developed a world-class complex brain surgery program, and led a premier training and research program on surgical neuroanatomy and skull base surgery.

In 2018, he was recruited to bring to Stanford his unique technical expertise and to collaborate with world-renowned Stanford colleagues across multiple disciplines to establish the preeminent center for comprehensive treatment of complex lesions in the brain, skull base, and pituitary regions. His top priority is to provide gentle, accurate, and safe surgery, in a team-based and compassionate approach to patient care.
*If you haven't already registered for this webinar, now is the time!*
https://attendee.gotowebinar.com/register/1132731577618189068

Introduction: The Approach to a Patient With Acromegaly Presented by Laurence Katznelson, MD Stanford University Pituitary Center Learning Objectives: 1. Identify the tests used to diagnose Acromegaly 2. Describe the step wise approach for therapy of a patient with Acromegaly Resection of the Medial...

In honor of Rare Disease Day 2020, we wanted to highlight one of the rarest flowers in the world. The Chocolate Cosmos i...
02/28/2020

In honor of Rare Disease Day 2020, we wanted to highlight one of the rarest flowers in the world. The Chocolate Cosmos is a flower native to Mexico. The species survives as a single, non-fertile clone created in 1902 by propagation. The flowers are a rich deep-brown color and grow to about 3-4 cm in diameter. As the name suggests, Chocolate Cosmos emit a delicious vanillin fragrance in the summer (also found in vanilla beans, some coffee beans, and some cocoa beans). Just as this flower has fought to continue to survive, its strength and determination reflect its beauty. That same beauty is a reflection of the rare disease community. The beauty is Rare!

The Beauty is Rare
By Carol Knudsen

I've been sick for a while now
each symptom a puzzle piece
doctor after doctor
and still no relief

It may be my mother
or even my friend
we keep looking for answers
will I be myself again?

And as if by chance
a connection is made
in the blink of an eye
everything can change

Being swallowed by darkness
stricken by fear
who do I go to?
there are no specialists near

Paralyzed in disbelief
frozen by the unknown
who can help me?
will I walk this alone?

Testing, surgeries,
and medications, too
names I’ve never heard before
this is a lot to go through

One night it hit me
in the midst of my pain
there were pieces of beauty
every step of the way

From the love of my family
to the doctors who cared
innovative procedures
surgeons practiced and prepared

New medications
fast-tracked for a cure
rare disease doesn’t own me
I will fight this for sure

Patient warriors showed up
jumping into the fray
support groups, lobbying,
Leading the way

Little by little
my strength began to bloom
I found strength in my weakness
and overcame my gloom

Out of the ashes
my life began to rebound
a change in perspective
turned my life around

Remember when you’re alone
and filled with despair
there can be beauty in ashes
the beauty is Rare

Join us for a free webinar!Friday, March 6, 202012:00pm - 1:00pm pst3:00pm - 4:00pm estResection of the Medial Wall of t...
02/27/2020
Resection of the Medial Wall of the Cavernous Sinus: Game-changing Technique for Patients with Acromegaly

Join us for a free webinar!

Friday, March 6, 2020

12:00pm - 1:00pm pst
3:00pm - 4:00pm est

Resection of the Medial Wall of the Cavernous Sinus: Game-changing Technique for Patients with Acromegaly

Presented by

Juan C. Fernandez-Miranda, MD, FACS
Professor of Neurosurgery and Medicine
Surgical Director of Brain Tumor, Skull Base, and Pituitary Centers
Director, Neurosurgical Training and Innovation Center - NeuroTrain Center
Stanford University Medical Center

After registering you will receive a confirmation email containing information about joining the Webinar.

If you have any questions please feel free to contact us at [email protected]

Learning Objectives:

1. Review previously reposted rates of cavernous sinus invasion and remission rates after surgery for Growth-Hormone secreting adenomas
2. Describe our innovative surgical technique for selective resection of the medial wall of the cavernous sinus
3. Present our current results applying this technique for acromegalic patients treated at Stanford University

Presenter Bio

Dr. Juan Fernandez-Miranda is a Professor of Neurosurgery and Surgical Director of the Stanford Brain Tumor, Skull Base, and Pituitary Center. He is internationally renowned for his expertise in minimally invasive brain surgery, endoscopic skull base and pituitary surgery, open skull base surgery, and complex brain tumor surgery. He has performed over a thousand endoscopic endonasal operations for pituitary tumors and other skull base lesions. He is highly regarded for his innovative contributions to the development and refinement of endoscopic endonasal skull base surgery, resulting in improved resection rates and outcomes in patients with pituitary adenomas invading the cavernous sinus, craniopharyngiomas, chordomas, chondrosarcomas, and skull base meningiomas.

Dr. Fernandez-Miranda completed his neurosurgery residency at La Paz University Hospital in Madrid, Spain. Upon completion of his residency, he was awarded the Sanitas Prize to the best medical postgraduate trainee in the country. From 2005 to 2007, he underwent fellowship training in microsurgical neuroanatomy at the University of Florida under legendary neurosurgeon Albert L. Rhoton, Jr. From 2007 to 2010 he continued subspecialty clinical training in cerebrovascular surgery at the University of Virginia, and endoscopic endonasal and open skull base surgery at the University of Pittsburgh Medical Center (UPMC). During his 10-year tenure at UPMC, he pioneered endoscopic endonasal approaches to highly complex pituitary and skull base tumors, developed a world-class complex brain surgery program, and led a premier training and research program on surgical neuroanatomy and skull base surgery.

In 2018, he was recruited to bring to Stanford his unique technical expertise and to collaborate with world-renowned Stanford colleagues across multiple disciplines to establish the preeminent center for comprehensive treatment of complex lesions in the brain, skull base, and pituitary regions. His top priority is to provide gentle, accurate, and safe surgery, in a team-based and compassionate approach to patient care.
https://attendee.gotowebinar.com/register/1132731577618189068

Presented by Juan C. Fernandez-Miranda, MD, FACS Professor of Neurosurgery and Medicine Surgical Director of Brain Tumor, Skull Base, and Pituitary Centers Director, Neurosurgical Training and Innovation Center - NeuroTrain Center Stanford University Medical Center Learning Objectives: 1. Review pre...

02/18/2020
register.gotowebinar.com

Reminder: Join us for a free webinar!

Tuesday, February 18, 2020

10:00am - 11:00am pst
1:00pm - 2:00pm est

02/12/2020
register.gotowebinar.com

Join us for a free webinar!

Tuesday, February 18, 2020

10:00am - 11:00am pst
1:00pm - 2:00pm est

Perioperative Care for the Pituitary Patient: Optimizing the Surgical Experience

Learning Objectives:
Discuss patient expectations for pituitary surgery and recovery
Discuss best practices to minimize risk of complications
What questions to ask your medical providers

Presenter Bio
Dr. Varun R. Kshettry, a neurosurgeon specializing in skull base and pituitary disorders at the Cleveland Clinic. He is also the director of the Advanced Endoscopic & Microscopic Neurosurgery Laboratory. He is an assistant professor of neurosurgery at Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. Dr. Kshettry received his BA in philosophy at the University of Pennsylvania. He earned his medical degree from Northwestern University. He completed his residency training at the Cleveland Clinic, during which he performed a research fellowship in skull base & microsurgical anatomy at Ohio State University. He then performed a clinical fellowship in minimally invasive cranial base & pituitary surgery at Thomas Jefferson University under Dr. James Evans. Dr. Kshettry has authored more than 100 peer-reviewed publications and book chapters and is an editor for a book entitled Endoscopic and Keyhole Cranial Base Surgery. He serves as an editor or reviewer for multiple neurosurgical journals. He serves on the Value-Based Healthcare Committee for the North American Skull Base Society. He serves as faculty director for the Cleveland Clinic Pituitary Tumor Board and is an investigator in several multi-center pituitary clinical trials. Dr. Kshettry collaborates closely with pituitary endocrinologists, neuro-ophthalmologists, otolaryngologists, pituitary pathologists, and radiation oncologists for multi-disciplinary care for patients with pituitary diseases. https://register.gotowebinar.com/register/940209290149990412

In honor of  , (who knew that was a thing?) we wanted to honor Acromegaly patients by starting a conversation. Facing a ...
01/23/2020

In honor of , (who knew that was a thing?) we wanted to honor Acromegaly patients by starting a conversation. Facing a rare disorder is a difficult battle starting with the diagnosis stage. The many symptoms of Acromegaly when looked at individually can be attributed to other illnesses, but when put together can be the light-bulb moment for someone looking for answers. Enlarged feet are just one of the symptoms, so ! Visit pituitary.org for more information on symptoms.

01/01/2020
12/31/2019
register.gotowebinar.com

Join us for a free webinar

Wednesday, January 8, 2020
1:00 PM - 2:00 PM Pacific Standard Time
4:00 PM - 5:00 PM Eastern Standard Time

Management of Recurrent Pituitary Tumors

Presented by
Paul Gardner, MD
Associate Professor of Neurological Surgery
Neurosurgical Director, Center for Cranial Base Surgery
Executive Vice Chairman for Surgical Services
University Pittsburgh Medical Center (UPMC)

Learning Objectives

Upon completion of this webinar, participants should be able to:

Recognize the role for surgery in treating recurrent adenomas
Understand the risk and role of radiosurgery for treatment of recurrent adenomas
Identify treatment indications for recurrent adenomas

Presenter Bio

Paul A. Gardner, MD, is an Associate Professor in the Department of Neurological Surgery at the University of Pittsburgh School of Medicine and Neurosurgical Director of the Center for Cranial Base Surgery as well as Executive Vice Chairman for Surgical Services for the Department of Neurological Surgery at the University of Pittsburgh Medical Center (UPMC).

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 served as a Director-at-Large. 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, he has authored numerous peer-reviewed articles and book chapters, and he presents frequently on the podia of local, national, and international scientific meetings and courses.

https://register.gotowebinar.com/register/1095070004547290379

12/24/2019
12/10/2019

Pituitary Patient Support Group: Saturday Dec. 14, 2019
Family & Friends Welcome.
Please join us at 10:00am or Live Stream with us on FB.
Speaker: Garni Barkhoudarian, M.D., Co-Director Pituitary Disorders Center-Neurosurgery
Speaker: Katherine Araque, M.D. Director of Endocrinology, Pituitary Disorders
Please RSVP: Lunch will be served following immanently following our speakers. Sharmyn, [email protected]
John Wayne Cancer Institute
2200 Santa Monica Blvd. 2nd floor, Santa Monica, CA
Free Parking in the parking lot directly behind the building

12/02/2019
register.gotowebinar.com

Join us for a free webinar!

Wednesday, December 4, 2019

Presented By

Zachary Litvack, MD
Co-Executive Medical Director - Neurosurgery & Spine
Co-Director - Swedish Neuroscience Institute
Chief of Staff - Swedish Cherry Hill Campus

Time: 11:00 AM - 12:00 PM Pacific Standard Time 2:00 PM - 3:00 PM Eastern Standard Time

Learning Objectives:

Objective 1: At the end of this webinar, participants should understand the role of surgery in management of Craniopharyngioma, including indications, limitations and risks.

Objective 2: At the end of this webinar, participants should understand the role of radiation in management of Craniopharyngioma, including indications, limitations and risks.

Objective 3: At the end of this webinar, participants should understand the role of medical management of endocrine disorders associated with Craniopharyngioma.

Presenter Bio:

Dr. Zachary Litvack is Co-Chair of Neurosurgery and Director of Skull Base and Endoscopic Neurosurgery at the Swedish Neuroscience Institute in Seattle, WA. He completed his both his Bachelor of Science in Bioorganic Chemistry/Molecular Biology and Medical Degrees at Brown University. Dr. Litvack then moved to Portland, OR to attend Oregon Health & Science University where he completed an Internship in General Surgery, Residency in Neurosurgery, and a Master’s Degree in Clinical Research from the NIH Supported Oregon Clinical & Translational Research Institute. Following his General Neurosurgery training, he spent an additional year in Pituitary Surgery and Neuro-Endocrinology under the direction of Dr. Edward Laws in Boston, MA. Dr. Litvack has performed over 300 pituitary operations, and participated in over 600 endoscopic endonasal operations in his career. He has been an invited presenter on endoscopic skull base surgery at multiple universities, hospitals and international conferences. At Swedish, he trains one neurosurgical fellow each year in Skull Base and Minimally Invasive Cranial Surgery (including pituitary surgery).

https://register.gotowebinar.com/register/7843453461306582028

Join us for a free webinar!Wednesday, November 13, 201912:00 PM - 1:00 PM Pacific Standard Time3:00 PM - 4:00 PM Eastern...
11/12/2019
register.gotowebinar.com

Join us for a free webinar!

Wednesday, November 13, 2019
12:00 PM - 1:00 PM Pacific Standard Time
3:00 PM - 4:00 PM Eastern Standard Time

Endoscopic pituitary surgery. Reoperation versus radiation?

Presented By

Theodore H. Schwartz MD, FACS
David and Ursel Barnes Professor of Minimally Invasive Neurosurgery
Department of Neurosurgery, Otolaryngology and Neuroscience
Director, Anterior Skull Base and Pituitary Surgery
Director, Epilepsy Research Laboratory
Weill Cornell Medicine

Learning Objectives:

Understand the leading causes of failure in pituitary surgery
Strategies to ensure successful surgical outcome for pituitary adenomas
Long external outcome after pituitary surgery

Presenter Bio:

Dr. Theodore H. Schwartz is the David and Ursel Barnes Endowed Professor of Minimally Invasive Neurosurgery and a Professor of Neurosurgery, Otolaryngology and Neuroscience at Weill Cornell Medical College, New York Presbyterian Hospital. He is the Director of Anterior Skull Base and Pituitary Surgery, co-Director of Surgical Neuro-oncology, Director of Epilepsy Surgery and runs a fellowship in Minimally Invasive Brain and Pituitary Surgery. He specializes in the treatment of Brain, Skull Base and Pituitary Tumors and Epilepsy using the latest techniques in minimally invasive endoscopy, microsurgery and brain mapping. Dr. Schwartz received his undergraduate and medical degrees from Harvard University where he graduated Magna Cum Laude. After completing his residency and chief residency in Neurosurgery at Columbia-Presbyterian Medical Center he then pursued advanced fellowship training at Yale-New Haven Medical Center. He is also the Director of a basic science laboratory investigating epilepsy using novel brain imaging techniques, which is funded by the NIH, where he has served on several grant review committees. He has also received several awards including the Gentle Giant award given by the Pituitary Network for his excellence and dedication to the field of pituitary surgery.

https://register.gotowebinar.com/register/8007279593758831629

Pituitary Network Association·  October is  We have heard many stories about how some of you have named your tumors. Som...
10/22/2019

Pituitary Network Association·
October is

We have heard many stories about how some of you have named your tumors. Some have even had eviction parties when they are removed. We have often thought about how the pituitary is a character that has such control over our day to day feelings and reactions so we decided to make a cartoon character out of a pituitary gland. We need your help to name it. Submit your ideas to [email protected] so we can name it together.

http://bit.ly/2op01Dp







Pituitary Network Association·  October is  Thousand Oaks Rotary Street Fairhttp://bit.ly/2op01Dp
10/21/2019

Pituitary Network Association·
October is
Thousand Oaks Rotary Street Fair
http://bit.ly/2op01Dp




Pituitary Network Association·   October is  Share Your Story - Samriddhi Paliwalhttp://bit.ly/2op01Dp
10/17/2019

Pituitary Network Association·
October is
Share Your Story - Samriddhi Paliwal
http://bit.ly/2op01Dp




October is Pituitary Awareness Month visit pituitary.org
10/04/2019

October is Pituitary Awareness Month visit pituitary.org

09/11/2019
register.gotowebinar.com

Join us for a free webinar.
Wednesday, September 18, 2019
Time: 10:00 AM - 11:00 AM. Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time

Experimental Treatments for Aggressive Pituitary Tumors

Presented by
Andrew Lin, MD
Neuro-Oncologist & Neurologist
Memorial Sloak Kettering Cancer Center

Learning Objectives:

During the conversation I will be:
1) Defining aggressive pituitary tumors.
2) Reviewing the current treatment options for aggressive pituitary tumors.
3) Discussing experimental treatment options including a phase II trial investigating the activity of the immunotherapies nivolumab and ipilimumab.

Presenter Biography:

Dr. Andrew Lin is a neuro-oncologist at Memorial Sloan Kettering Cancer Center (MSK) and a member of the Multidisciplinary Pituitary & Skull Base Tumor Center. In collaboration with my colleagues in endocrine, neurosurgery, and radiation oncology, I treat patients with aggressive pituitary tumors, who are resistant to conventional treatments (i.e. surgery and radiation), with chemotherapy. With my colleagues at MSK, I have published several research articles on pituitary tumors and opened several clinical trials.

https://register.gotowebinar.com/register/386296219214016268

Address

187 E Wilbur Road
Thousand Oaks, CA
91360

Alerts

Be the first to know and let us send you an email when Pituitary Network Association posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Videos

Share

Category

Nearby clinics


Other Medical Centers in Thousand Oaks

Show All

Comments

Join us today! Pacific Neuroscience Institute's expert neurosurgeon Garni Barkhoudarian, MD, will discuss pituitary tumors and brain fog for a 60-minute virtual webinar hosted by the Pituitary Network Association.

Learn more and register: https://pituitary.org/events/pituitary-tumors-and-brain-fog8521/
Is this page no longer active?
Attention Cushing's Patients - Paid Cushing's Study


trinity
Opportunity to Participate in Important Study
Have you received a physician-confirmed diagnosis of Cushing’s syndrome?
If you are 18 years or older and answered YES to the above question, you may be eligible to participate in a study being conducted by Trinity Life Sciences, a healthcare research and consulting company.

The purpose of this market research is to help doctors, patients, caregivers, and researchers, among others, better understand the effects of Cushing’s syndrome on the lives of patients.

This study will give you the opportunity to describe, from your perspective, the burden related to Cushing’s syndrome on yourself (and those who help you manage your disease, if applicable).
The results of this study may be published in a medical journal and presented at a medical conference.
Results will be combined, no personally identifying information will be available to researchers, and all data will be kept anonymous.
By participating in this study, you can contribute to a better understanding of Cushing’s syndrome which can help other families.
The study is being conducted with participants across the United States. Those who qualify to participate through the screening process will complete an online survey lasting approximately 30 minutes. All personally identifying information provided will be CONFIDENTIAL. Qualified individuals who participate in the study will have the option to receive a check or gift card for $75 as compensation for your time.
Our goal is to have as many participants as possible (50-60 participants) from across the United States. The more that researchers can learn from you and understand your experience, the better equipped they will be to help understand this rare disease. Please strongly consider participating in this effort to help understand Cushing’s syndrome.

Your voice matters!

HOW TO PARTICIPATE IN THIS STUDY:
If you think you may be eligible for this research, please visit https://www.cushingsexperience.com for instructions on how to get started. Participation in this survey is voluntary, and you may choose to withdraw at any time. You will not incur any costs for participation and all your personal information will remain strictly confidential.

If you have any questions about the study, please contact [email protected]. This study has undergone an ethical review to ensure it is compliant with ethical research standards for the protection of respondents.
Don't miss this!
April is Adrenal Disease Awareness Month
→ World Sleep Day

MY BIZARRE OVERNIGHT SLEEP TEST

Today is World Sleep Day. No, it’s not an excuse to sleep all day.

It’s an annual event organised by the World Sleep Society, with the aim of celebrating sleep and raising awareness about the importance of getting a good night’s rest.

[More info at: worldsleepday.org]

It’s prompted me to retell the story of my bizarre overnight sleep test at a hospital normally reserved for Royalty.

Brace yourself. You might have a sleepless night after reading this! (Not from alarm, but from laughing).

SOME YEARS AGO, I had an overnight sleep test at one of London’s most prestigious hospitals.

It was a comical disaster and I didn't sleep a wink.

That's because the machinery to test if I snored was louder than my snoring.

This was no ordinary hospital.

My sleepless overnight sleep test took place at the world-famous King Edward VII's Hospital London.

It's the exclusive medical establishment attended by the Queen, the Duke of Edinburgh, Prince Charles, the Duchess of Cambridge, and top military brass.

(Except in my case I was admitted only as a ‘category four patient’ – meaning an ordinary member of the public.)

▪ AN ALMIGHTY COCK-UP

I complained to the hospital management about my sleepless sleep test.

But after two 'extensive' investigations by the hospital and months of correspondence, the King Edward VII couldn't find anything wrong.

Well, I've learnt in life that sometimes you have to persevere.

If you know in your heart that something is wrong and needs to be put right, don’t give up. Intervention might save lives.

I catalogued a list of complaints. The hospital didn't deny my version of events, but still they couldn't find anything amiss. This seemed bizarre.

Under the Data Protection Act, I obtained their medical records about me.

I then began to realise that the word 'bizarre' was totally inadequate. I wrote back the same day:

'Your hospital's record of my admission does not give me confidence in the abilities of your organisation.

'My height was incorrectly recorded, as was my weight and my age.

'Most alarming, however, was your hospital's medical note that my testicles had been removed.

‘I can only be thankful that in the circumstances I did remain awake.

'Heaven knows what else might have happened had I fallen asleep.

'I can assure you that I am entirely complete.'

Never accuse Jon Danzig of having no balls!

This was now war.

Back came the hospital’s reply.

They agreed my testicles were intact. The medical entry, they now explained, stated a small lump (lipoma) had been removed from my testicles.

Yet this too was wrong.

I got out a magnifying glass for a closer look (at my medical records).

It then all became clear.

A lump had been removed some years earlier from my back.

But the nurse had written what looked like 'balls' instead of 'back'.

Then another nurse crossed out the word 'balls' and wrote 'testicles'.

This was becoming one almighty cock-up.

Action only came when I fired a missive telling-all to the hospital’s then top man, the Brigadier Colin Harrisson, OBE.

Thank goodness he didn't just sleep on it.

Immediately, he suspended all sleep tests at the hospital, ordered a review, admitted the hospital had been wrong, apologised, refunded my money and paid compensation.

In my opinion the Brigadier Harrisson was an officer and a gentleman.

▪ OUT-OF-BODY EXPERIENCES

My doctor had ordered an overnight sleep study because sometimes I snored and stopped breathing in my sleep, a condition called 'sleep apnoea'.

I also experienced strange out-of-body experiences.

At 11pm, tucked up in the hospital bed, I was ready to snooze and to start the overnight sleep test.

But the nurse didn't know how to set up the computer properly.

She started banging it and asked me if I knew how it worked.

I didn't.

She then asked how tall I was. I replied, “5’10”.

“What is that in centimetres?”

I didn't know.

She then asked my weight in kilograms which I did know. Then I got into bed and was tethered to various wires connected to the computer.

When I looked at the computer screen, I saw that my height had been put down as '5'.

“What does that mean?” I asked the nurse.

“That’s your height,” she replied.

“But it says five. I am not five. What measurement is it in?”

“Centimetres.”

“You have told the computer that I am just five centimetres tall?”

“I’m sure it doesn't matter,” she replied.

“Doesn't matter?

"What’s the point of the exercise if it doesn't matter?

"You have told the computer that I am 85 kilograms in weight and five centimetres tall.

“The computer will do its calculations based on an extremely short but incredibly wide dwarf.”

The nurse pondered for a while, then disconnected me from the computer, handed me a tape measure and stood me against the wall.

I thought she was going to measure me. But she said she was busy.

Have you ever tried to measure your height on your own?

It was not easy, especially at midnight, when I was supposed to be rested for an overnight sleep test.

But after eventually completing the exercise, the nurse reattached me to the computer and told me, "Go to sleep."

▪ WHOOSHING

I tried. I really tried.

But 15 minutes later, there was a whooshing noise, a constriction in my right arm and then another whooshing noise.

It was the blood pressure cuff affixed to my right arm.

It was scheduled to go off every 15 minutes throughout the night.

I can’t sleep through that!

What was I supposed to do, have 14-minute naps interrupted by the snoring blood pressure unit?

If that wasn't bad enough, every ten minutes, the computer started to whistle at me.

Maybe it got turned on by the thought of being hooked up with an over-weight dwarf.

At 3 am the nurse came in again.

“Jonathan, are you asleep?” she asked.

Of course I wasn't.

So, she started talking to me.

The next morning, bereft of sleep, another nurse came in.

“Good morning, Jonathan!” she exclaimed brightly.

Then she leaned over the bed and whispered, “Jonathan, I've heard all about your out-of-body experiences.”

“Oh yes,” I replied.

She leaned over a little more.

"Can I ask you, Jonathan, why you came here for these tests?”

“Well,” I replied, “I've often felt tired and without much energy.”

She looked around to check that no one else was in the room. She then started to talk in a low, conspiratorial voice.

“I shouldn't be telling you this. But I know a bit about out-of-body experiences,” she said.

“Let me give you some advice.

"All that flying about at night is bound to make you very tired.”

▪ SLEEPLESS

Later on, my doctor reported that there was no evidence that I had sleep apnoea.

It made me realise what a joke some tests can be.

There was no evidence of sleep apnoea that night because there was no evidence of sleep.

The exercise had cost £400.

That was something else to keep me awake at night.

I now know that during sleep tests there should be no noisy equipment to wake up the patient.

And blood pressure monitoring during the test is not even necessary.

I had expected better from a hospital designed to cater for Royalty.

But the then Chief Executive of the King Edward VII's Hospital, the Brigadier Colin Harrisson, OBE, personally wrote to me,

“I accept that the conduct of your sleep study was poorly managed.

"I have suspended sleep studies in the hospital pending an internal review.”

He refunded the cost of my sleep test and paid £600 in compensation, from which I made a donation to the Pituitary Network Association.

▪ POST SCRIPT: I’m pleased to report that these days I’m sleeping well and free of snoring/apnoea. But for all of us, the combination of Covid-19 and Brexit is enough to keep us awake all night.

▪ Report and graphic by Jon Danzig

▪ What is sleep apnoea/apnea? medicalnewstoday.com/articles/178633

▪ Jon Danzig is a campaigning journalist and film maker who specialises in writing about health, human rights, and Europe. He is also founder of the information campaign, Reasons2Rejoin.

▪ Follow Jon Danzig on Facebook: Facebook.com/JonDanzigWrites; Twitter twitter.com/Jon_Danzig; LinkedIn linkedin.com/in/jondanzig/; YouTube youtube.com/user/JonDanzig