Kate (Fairley), July 17, 2008. Kate had symptoms since 1991. She had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituitarism and a CSF leak. She has appeared on National Geographic TV in the Science of Obesity.
Jamie J. Van Gompel, MD, FAANS
Associate Professor in Neurosurgery and Otorhinolaryngology
Program Director, Vice Chair of Education, Department of Neurologic Surgery
Associate Program Director, Neurosurgical Skull Base Oncology Fellowship
Program Director, International Neurosurgery Fellowship
Mayo Clinic – Rochester, MN
and
Garret W. Choby, MD
Rhinologist
Endoscopic Skull Base Surgeon
Mayo Clinic –Â Rochester, MN
After registering you will receive a confirmation email containing information about joining the webinar.
If you have any questions or suggestions please feel free to contact webinar@pituitary.org
DATE: Wednesday, March 13, 2019 TIME: 2:00 PM – 3:00 PM Pacific Daylight Time, 4:00 PM – 5:00 PM Central Daylight Time, 5:00 PM – 6:00 PM EDT
Webinar Description
Does Extent of Resection Matter in Pituitary Surgery and Postoperative Nasal Care
Presenter Bios
Jamie J. Van Gompel MD(Honors), BS(Honors) is an Associate professor in neurosurgery and Otolaryngology specializing in endoscopic/open skull base at the Mayo Clinic in Rochester, Minnesota, USA. He completed his undergraduate and medical school training at the University of Wisconsin at Madison. He has worked at the NIH as well as completed a Howard Hughes Fellowship studying neuroendocrine tumors. His neurosurgical training was undertaken at the Mayo Clinic and he went on to complete a complex cranial fellowship under the tutelage of Dr. Harry van Loveren at the University of South Florida. Currently, He is the Education Vice Chair, Program Director of the Neurosurgery Program and Associate Program Director of the Skull Base Oncology program. Further manages a busy skull base oncology and pituitary practice in addition to performing research with Active NIH U and R funding. He has authored over 150 publications of which over 30 are pertinent to pituitary pathologies and endoscopic surgery.
Garret W. Choby, M.D., is a fellowship-trained rhinologist and endoscopic skull base surgeon practicing at the Mayo Clinic in Rochester, MN. He completed his residency training at the University of Pittsburgh and his fellowship training at Stanford University. Dr. Choby works closely with his neurosurgical partners to treat a variety of pituitary and cranial base tumors. His primary research interests include improving oncologic and quality of life outcomes for patients undergoing endonasal tumor resection and tailoring individualized treatment for patients with chronic rhinosinusitis.
James K. Liu, MD
Professor of Neurosurgery
Director of Skull Base and Pituitary Surgery
Rutgers University, New Jersey Medical School
RWJ Barnabas Health
Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center.
Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland.
Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas, meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm.
As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu’s research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery.
Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.
Today is the 31st anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Â Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Â Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Â Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I’m not looking forward to telling my endo!
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related đ
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
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.)
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.
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. Prevedelloâs 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.
Kate (Fairley), July 17, 2008. Kate had symptoms since 1991. She had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituitarism and a CSF leak. She has appeared on National Geographic TV in the Science of Obesity.
A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:
CUSHINGâS AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!
April is CUSHINGâS Awareness Month. In honor of raising awareness, I decided to use my original Cushingâs Awareness Ribbon art to create a sticker.
In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…
Cushingsâs changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldnât control and the daily pain. I forgot the carefree beauty of simply being alive.
I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.
The simple truth of the matter was that I wasnât sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.
And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.
The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasnât a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didnât even know what Cushingâs was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.
As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.
I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.
For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushingâs Awareness Ribbon or blue and yellow flowers.
I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.
These stickers are 2.5âx2.5â full color vinyl circles (approximately the size of your palm.).
Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushingâs – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.
If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.
Hereâs to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!
